Sensational New to Medical Science Brain Damage Psychogenically Dismissed. Copyright © Stephen Cattier 1998 - 2009. All rights reserved.
Not getting anywhere.
Updated March 26, 2016 22:40 GMT
25 May 2004, Weymouth Street, London, W1.
30 January 2016: Two doctors I asked for a consultation with since my last news update both refused to see me. I an unable to write to doctors more often.
25 October 2012: I was disbelieved by two NHS neurologists I consulted in London.
8 January 2012: Two neurologists I wrote to for consultations refused to see me. One said my condition is not his expertise which I think means he reckons it is mental illness, and also pointed out that I had seen a number of neurologists meaning that they would have seen anything neurological.
June - November 2011: A urology consultant prescribed me Vesicare, but after two small and one normal doses I discontinued it as I did not improve and it was a strain upon the nerve damage. I faxed the main consultant requesting a second opinion but received no reply. The phone was on answerphone I think when I called about it twice. Will have to revisit the original consultant instead.
A neurologist did not want to see me when I wrote and asked him for a consultation. He was not a maverick.
I doubt if my GP would refer me to another neurologist unless I found one interested in seeing me.
28 April 2010: The local health authority now says I can ask for a second opinion from my G.P concerning December's neurological consultation.
24 April 2010: The local health authority has refused to let me appeal about being misdiagnosed anymore because they reckon I have had a sufficient number of them previously. I had tried appealing about the failed consultation on 18 December with a local neurologist.
18 December 2009: The NHS consultant neurologist I consulted today said he is only contracted to look for known medical conditions and refused to look for my new one and so just examined me for known ones. He said it is the job of researchers to discover new ones and then tell doctors how to diagnose them. I actually consulted him about fifteen years ago. He might have saved me a lot of unnecessary work saying that by avoiding me writing to all of Britain's neurologists if, that is, they believe the same as him. I could then concentrate on contacting researchers instead. Consequently, researchers, I am prepared to travel as far as Australia if all my expenses were paid. My email address is on my home page. I forgot to mention some of my symptoms to him but I expect it would have made no difference.
I travelled the couple of miles or so to the hospital by electric bike in about three inches of snow that had fallen during the night. The salted main roads were clear of it and the traffic was as slow as I was. I had a mishap and had to go a short distance back home when a bungee wrapped itself between the sprocket and the electric motor locking up the former. I gouged it out with a screwdriver. I then went to the wrong address so was twenty minutes late but it was ok.
27 November 2009: I spent two days in hospital last week suffering fromI had forgotten to remove from the rear carrier wrapped itself between the gea asthma brought on by fasting twelve hours the previous day for a cholesterol test which was 5.2. During the fast I had kept my exhausted hunger mechanism safely topped up with pyridoxine tablets (Vit. B6) but the strain upon the damaged nerves was too great. The asthma was preceded by a feeling of suffering from a cold but minus the blocked nose. The ambulance's oxygen appeared to be responsible for stopping the attack at midnight rather than it being a coincidence. I only summoned it because I was unable to see an end to it unlike with the several ones previously. I did not want the nerves controlling my chest muscles to become exhausted and damaged and be unable to breath at all. I was discharged when my respiratory flow rate reached 400, but it has since deteriorated. I received about four once daily doses of prednisolone and took two types of inhaler and escaped contracting bronchitis but coughed somewhat. The former drug I was glad to stop as it was stiffening my mind and pelvic floor muscles, but the inhalers, Symbicort and Bricanyl, had benign side-effects and so will use them in an emergency. I might even acquire my own oxygen. My asthma has a different modus operandi to the conventional type that doctors are familiar with. They were unimpressed with my explanation of the asthma's cause and certainly disbelieved the new to medical science brain injury. One said he did not want to become famous by discovering a new illness, and another said he would view my web site if he had time. I wonder whom the good Samaritan will be who shall look for this thing.
Over a week later and my right-hand wrist hurts occasionally when using it where a nurse took blood for oxygen level analysis via a deep vein for greater accuracy rather than a surface one above the elbow. I am wondering if he went in too far and pricked a tendon. It felt like a funny bone sensation at the time which went up the palm of my hand in a narrow line, but I just winced and never let on about it not knowing what was expected having not had it before. The left-hand wrist he did afterwards was normal. I refused his request for a learner to have a go on that one as someone else had already been unsuccessful on the right wrist and I said I was too sensitive from this brain injury to be pricked a lot.
06 April 2009: My status of health is still the same. Have not seen any doctors since last year.
17 May 2008: The local psychiatric clinic has refused to see me after my GP referred me there upon my request considering I saw two psychiatrists there a few years ago. I wanted a drug sensitivity test to "prove" to me that I do not have the condition because they would not do it before to try and prove I am suffering from it so I thought try it the other way around. One cannot win with an illness that has occurred before its time unless one has enough money to throw at a greedy doctor to do the relevant tests.
01 October 2007: Even a letter from my sister has not budged my GP into looking for the illness. The data protection act prevented him from discussing my case with her. To circumvent it she would have to accompany me on a visit (edited 08 February 2008).
06 August 2007: On a warm sunny afternoon last Friday I paddled through a puddle of seawater in my shoes and socks with my bike at high tide to avoid squashing vulnerable vegetation I judged to be holding the beach together. I had already safely received a foot full of the H2o by accident so it seemed alright to do. However, the coldness of the water on my skin has since made my feet feel as if they have been dipped in Vicks VapoRub ointment and produced fatigue, but am improving. I must use Wellington boots next time. Being immersed in cold water for more than a short while would cause more nerve damage from over-depleting the little remaining nerve fuel in my injured mind nerves. See video of me in a boat. I have never suffered from a phobia of water. Not wanting a bath in the distant past made it seem that I did but it was instead a fear of receiving further neurological injury from its temperarature. (edited 16 August and 1 October 2007).
26 July 2007: My new GP disbelieves me so to argue the point I sent him quotes from the BBC TV programme Tiny finding that opened new frontier :
Email 1: "Science can throw up unexpected bizarre discoveries like for example my brain illness but which no one wants to know about. See example of the atom below:
'No one ever expected the atom to be as bizarre as it turned out to be. Since 1905 when a young Albert Einstein demonstrated for the first time that atoms must exist, they have consistently flummoxed scientists by their weird, almost contradictory behaviour.'
No one ever expected Limbitrol to damage a brain in ten days but it will if one first has the certain type of nervous exhaustion that I had, with all due respect."
Email 2: " 'Here's a quick flavour of just how strange an atom is. And remember atoms aren't obscure objects - everything in the world around us is made of atoms - we are made of atoms." My brain is made of them too! Therefore, unexpected, bizarre and complex conditions like mine can arise and should be looked for to be on the safe side. Mine has never been looked for because its always been said to be anatomically impossible. An oxygen test might temporarily paralyse my affected respiratory mechanism. Omnopon/Scopolamine in 1988 (tooth extraction/infected jaw under general anaesthetic by Mr Clarke) markedly reduced my breathing rate per minute. Therefore, one could try the latter too to try and prove my fatal sensitivity to Limbitrol. Dothiepin nearly killed me in a week in 1975 and Valium gave me a relapse in two weeks on it in 1981."
Email 3: "Please be openminded like Ernest Rutherford.
"This astonishing discovery that atoms are mainly empty was made in 1909 in Manchester University by the indefatigable Ernest Rutherford. Rutherford had great courage as a scientist and was prepared to fly in the face of convention.
So when he announced that the atom was mainly empty, he did so knowing his claim flatly contradicted the then known laws of physics. These demanded that all atoms collapse instantly. It was a seismic moment in the history of science."
Re. my condition, here is an interesting BBC story of a cat that seems to sense when patients are imminently to die. The Maudsley Hospital's Villa ward cat in 1977 slept on my bed a lot when I first went into that locked mental ward bedridden unable to walk and speak from my physical condition until I once gently pushed it off the bed with my foot. It never returned after that. I reckon it had taken to me because unlike all of the other patients it either sensed I was not mentally ill, could sense my severe physicall illness or liked my stillness owing to my movement disability from the nerve damage. A nurse commented at the time, "Stephen knows why the cat likes him," when I smiled after he had just wondered why the cat preferred my company to the others. I had my stillness in mind as to the reason.
16 March 2007: Bt Wholesale, well done as I was finally able to join another ISP.
The new GP I saw claimed to be open-minded but not enough to believe me it seems.
08 March 2007: The BTW team leader phoned me with a progress report; they are still trying to solve the problem. The ISP below who incorrectly billed me is refunding the payment.
06 March 2007: Edited 13.27 pm 08 March 2007. Re. thread from 26 February. Would you believe it. BT Wholesale's systems have messed up again owing to that failed migration of mine with the other ISP last November/December still gumming up the works so I am not free to join another ISP today when days ago they assured me I would be. www.samknows.com warned me last month there could be a problem when their availability checker came up for my phone number that a MAC code was required again when briefly it had said a cease order was in progress, but BTW assured me it was alright. I received a good phone call from the BTW team leader today whom I deal with so looks like the problem will be solved forthwith. I also discovered yesterday from last months bank statement that the ISP I had unsuccessfully tried to join in November has erroneously commenced billing me by direct debit. Their system was down earlier so have to ring back to find out why but one system told the spokesperson that it was cancelled in December. Their systems are out of sync with one another too.
05 March 2007: I had pleasant time volunteering for Autism research at a University today. Got paid for it too. I do not recall giving the taxi driver the modest fare for the journey to the station on the way back. I hope he did not forget to ask for it.
26 February 2007: Tomorrow, I will have been without broadband internet for six weeks since I cancelled my ISP (a working MAC migration code was impossible to be conjured up). I was finally told by BT. Wholesale lady at Gatwick on about Tuesday that their systems are out of kilter on this cancellation owing to a six week failed migration to another ISP in December which had failed to build properly and has put a spoke in the works. Their systems disagree over what my status is. Hence the different answers I have received depending upon what system the spokesperson happened to be viewing at the time. A team leader is dealing with it now and they said it will be sorted.
Obviously, BT's systems are both incapable of automatically alerting them to this type of problem and providing the correct remedy. Instead, the layman customer has to patiently instruct them of it until they agree with one. I have known more than the experts in this case because of being at the sharp end experiencing the fault. It is the same with my condition and the physicians. It is up to me to prove the new illness, but how can I considering they refuse to listen? Find a Harley Street doctor to do the tests privately yes, but that costs money; currency talks. The alternative is to be accepted as a volunteer for medical research projects using brain scanning but they generally require non ill subjects which counts me out unless I kept quiet about the condition. Would that be incompatible with Christian honesty? One has to fill out a form stating one is free of known neurological conditions. Mine is unknown to science, so would that count me in? If I were to record that doctors claim me to be psychotic they would say I possess too many problems to be accepted anyway as has happened before. However, see below for how I could have received a finger movement fMRI brain scan if I could have been sensible enough when applying for it. Part of me does not want to become diagnosed and this Id so to speak sometimes comes out and is unstoppable owing to the damage to my brakes.
08 January 2007: I cannot fathom it. I spoke to a GP on the phone yesterday, who was providing weekend cover for my area, about my new illness and web site, but he has not observed the site yet, according to my web stats anyway. He might never either. A big red warning triangle must blink in their heads whenever a person claims they suffer from a new to medical science ailment. I can tell from their manner they are saying to themselves, "Aye, aye, he thinks he's special. Certainly it's a mental patient I am dealing with here." Imagine, all those university standard brains thinking something as cockeyed as that every time. I wonder, for example, if that also happened to the first person in history to suffer from a toe ache. I might not be the only case of its kind either, but I have not discovered any others in the nine years of my web site.
I had an aggressive asthma attack last week which is a symptom of the new illness, but it has turned into bronchitis (white sputum). I am on the mend now with garlic and honey and so managed not to see a doctor. I preferred to deal with it alone instead of in hospital where it would have been harder to endure - other patients would have been driven nutty by my coughing anyway. I have had to be very careful coughing because my muscles only work safely for short periods of time. I should have called in the covering weekend GP. However, I sent two videos to my GP but have yet to hear if he can observe anything new to medical science about it or not. I have been coughing extra during it whenever I touch rough things or become slightly thirsty. This is an effect of hardly any fuel in the mind's nerves to run the nervous system and so one thing can affect another e.g. it can squeeze the lungs together. The mind is ordinarily connected to every part of the body.
21 December 2006: Recently, I requested a local co-religionist whom I might never have met (I have been too ill to attend the Kingdom Hall meetings hardly at all in the last thirty-two years) to do something for me, but I learnt yesterday that he wants me to make a better effort first before its done. In other words he disbelieved me when I said I can do some things but not others. This is because ordinarily if one can do it then nothing stops the other from being accomplished. However, with me it is a symptom of the new illness and doing the other would immediately cause a relapse. If, once upon a time, ME sufferers were branded as malingerers - and still are in places - and they look ill, it means I have no chance of being believed because I appear totally well when I am actually one of the most critically, physically ill persons that has ever lived, but the doctors claim it to be anatomically impossible. I find it annoying, disappointing and hurtful to be disbelieved as they no doubt would if the roles were reversed, but I make myself see it from their point of view which helps allay those negative emotions but excluding the doctors because, with respect, they should know better. *edited 10.34 GMT 08/01/07.
19 September 2006: My appeals about being misdiagnosed have failed. The procedure took two years. With respect, doctors want their too close minded heads examining.
I have just removed on 19 January 2007 a humorous video where I call doctors silly fools. I suppose it was not nice of me really to put it online when they think they are dong their best for me.
Harley Street would do the medical tests privately if I were wealthy enough, but the strapped for cash NHS absolutely will not do "unnecessary" ones in order to save money, but it has been a false economy in my case e.g. the four years I wrongly spent in mental hospitals. Edited 19 January 2007.
06 September 2006: Kirk Bloodsworth exonerated death row inmate. I wonder how long it will be before I can prove I have been misdiagnosed. They disbelieve I am fatally sensitive to Limbitrol-like drugs. The doctors refuse to even look for my illness. They have only searched for conditions they imagined I might have which is absolutely terrible of them believing they know it all and refuse to listen to me with all due respect to them. They disbelieve that the diagnosing system is fallible for discovering new organic illnesses. How daft is that? 100% on the Richter scale.
23 August 2006: I wrote the following on 10 March but left it out of my web site because it was too strong I judged but I feel like including it now owing to having two strong ciders in a row:
"I am boiling with anger (Ephesians 4:26-32: "Be wrathful, and yet do not sin.") owing to one strong cider upon an empty stomach coupled with the following TV program's topic reminding me how doctors can be so close minded and disbelieve in my ailment. "Impossible" things can come true states the Discovery Science program about mega-lightning that shoots up into space from the tops of clouds i.e. sprites. For years airline pilots refrained from reporting them in case their employers attributed it to hallucinations and grounded them. Experts deemed it a fairy tale. I bet that doctors if they had a son suffering from my condition they would look for it, but because it is me they refuse. I do not hate doctors. When they get it right they are marvellous, but God help some of us when they get it wrong. We have to be philosophical though and take the rough with the smooth with their opinions. I do not think I would like to do their job with potential mistakes in the offing like what has happened to me."
19 July 2006: I had normal results for catecholamines and a 9am cortisol.
13 June 2006: My blood test result for leucodystrophy was negative. ESR was also normal (12).
25 March 2006: The re-appeal to the health Commission has failed. It is up to my GP whether I get a referral or not they say.
So, now it is back to the Ombudsman again to see what they can do.
17 March 2006: I had the blood taken today for the private metachromatic leucodystrophy test, plus an ESR one for inflammation that I chose out of the ones ordered by the private neurologist for apparent excessive perspiration. If I still cannot get the others done on the NHS I will likewise have to pay for them too no doubt i.e. catecholamine's (plasma, cost £55), thyroid £250, and blood sugar. I have got the money but all the same what a pain to have to fork out when the NHS should give me them for free. My GP is the stumbling block; he thinks they are unnecessary.
At Camden market whilst I was taking photographs next to the main road a fellow called out to me from across the road saying that I looked like David Bailey, I was so intent on getting the perfect shots.
Three people asked if I required help lugging my shopping trolley up and down the station's stairs which was nice. I declined but wished I had not now as the strain made my right arm weaker for a while afterwards. Would cause more brain damage and a relapse if I overused the muscles.
March 2006: I hope to have my web site fully functioning by tomorrow. It was ruined again by me using FTP and MS Front page together.
01 March 2006: My video files are uploading to my web site. It has taken me a couple of days or so to work out how to FTP them after the hosting company sorted out the problem. I previously exclusively used Microsoft Front Page publishing but was advised to use FTP for just the video files as front page gobbles up web space for some security reason.
The real cause of the coloured line that appears down the right-hand side of the small kbs wmv files is because the quality setting in Windows Media Player 10 is set to "Use high quality mode." It disappears when "Use overlays" is chosen instead. Must mean a fault somewhere.
26 February 2006: The coloured line down the right hand side of certain sized wmv video files has disappeared because I uninstalled and reinstalled a fresh version of Windows Media Payer 10. See 1 March above for update.
25 February 2006: I do not wish to appear disrespectful to doctors but I have to say I think they are hopeless incompetents when it comes to diagnosing new illnesses like mine.
My apologies for the unavailability of the video clips on my web site. The site has been either totally off or malfunctioning for the past eight days owing to an apparent fault on the server that the hosting company has been unable to get to grips with yet. The latest is they claim I have used up my allocated 1 GB of web space and this is the reason why I am unable to upload anymore files when in fact I have only uploaded over 300 mbs. When I started uploading, Front Page 2003 stated that I had no files at all on the server - except for one called catalog which has since disappeared - when according to the hosting company I had already used up over 600 mbs.
14 February 2006: I could not resist building a computer, the second one I have done since about 2001. It has two Western Digital 10,000 rpm SATA 1 drives in RAID 0 striping mode utilising a Gigabyte GA-K8N Pro Sli motherboard that has a AMD 64 duel core 4.2 Ghz cpu. Graphics card is a Geforce 6600LE XFX which plays MS Flight Sim. 2002 with all the sliders and screen size set to maximum. Windows XP Pro, with a good compliment of software programs, boots up in about 55 seconds and closes down in thirty seconds. The quiet 500 watt Enermax power unit was apparently responsible for blowing my extension lead's 3 amp fuse. A 5 amp fixed it.
After constructing the computer I discovered I had erroneously connected up the reset button and the power-on switch leads (I had put one of them on a system fan plug). I had initially also deliberately left the power unit's lead off - the one sending information to the BIOS about the fan's rpm - because I could not see anywhere it went until later. Oh to possess a nice working brain to avoid such blunders.
Two faults: In Administrator, Microsoft's Media Player creates a thin green line down the right-hand side of wmv files. However, it does not happen when playing them in a user with the same player. Odd.
The couple or so annoying clicks that occur from the loud speakers when the computer is booting up disappear when it is doing an uninterrupted shut down and start up. Also, sometimes the computer's loud speaker does a strangled several seconds of sound instead of the single short beep.
I put an edited with Microsoft Movie Maker DV file back onto my video camera and there was one defect in the sound, a big click. A second attempt at sending it also had it. However, it did not occur on the wmv file of it.
I should have got my priorities right and paid for the M L medical test first (see below). However, I have an appeal in progress to try and get it on the NHS and am soon to hear if I have been successful or not; but I do not mind paying for it but would rather spend the money on a 500 Mb hard drive for video editing instead.
03 February 2006: A private metachromatic leucodystrophy test only costs £85 plus travelling expenses to London.
01 February 2006: Why should it be so hard to convince doctors one is suffering from a new to medical science illness hey consider too outlandish to be true? They should look for it just in case instead of maintaining they would be nincompoops to do it as one actually said in 1976.
25 January 2006: The Harley Street consultant disbelieves me and will only be interested in investigations he asked my GP to do on the NHS but which GP refused e.g. metachromatic leucodystrophy - 'check white cell enzymes,' of the brain I presume. Before I consider paying for it I shall ask one last remaining new GP at the surgery if they will do it on the NHS instead considering some of my my EEGs indicated a possibility of leucodystrophy. After all, the nerve damage from the nervous exhaustion and Limbitrol and from the relapses since then might extend to that part of the nerves. Who knows.
Re. Omnopon/Scopolamine, it does seem from what he says it might be the incorrect test because it can 'cause significant respiratory depression' which I think could be confused with a "normal" bad reaction to it like my GP also said. Consequently, further investigation is warranted.
Looks like I shall be reduced to writing to all remaining neurologists in the country to see if any believe me. Perhaps I shall never become diagnosed; nearly half a lifetime with the condition has already passed by.
11 January 2006: My GP has refused to do the tests suggested by the Harley Street private doctor. I have just asked the latter to quote me a price for an Omnopon/Scopolamine test to reveal my weak respiration from the brain injury.
The Health Commission failed to seek a clinical opinion which means the Ombudsman has referred my case back to them.
I went sprawling last evening descending this same steep hill in the dark and rain when my electric bike ran into the side of the kerb - steamed up goggles (de-mister is now on my shopping list). The armoured Dainese motorcycle suit did its job. Tough bike the Solartracker.
Purchased a Reevu cycle helmet RVLX1363º incorporating a rear-view mirror (I covered the vents with the black tape to prevent ingress of cold rain to head). Unable to see the mirror with donned motorcycle goggles and thick balaclava though. Momentary fix, pull down the former and push up the top of the balaclava's eye opening. Be alright in the warm summer though when I do not require face protection from the cold. I think the base of the back of the helmet should be thicker for best head protection there. Reevu's all enclosed similar motor bike helmet would possibly be too heavy and tight for my muscular and skin sensory problems from the brain injury. Also, the breathing in of cold air would flood the big internal space affecting my exposed facial skin? A balaclava obviates it confining air to the mouth which gets a blast of warm air every breath to somewhat compensate for the cold's draining effect upon the exhausted nerves.
22 December 2005: It is awful that academics including doctors who know their subject cannot accept the word of an ordinary person claiming to suffer from a new to medical science brain injury like myself because it sounds too outlandish. They should disregard their diagnosing book which is "lying" to them in this case.
09 November 2005: Visited Camden Market, Kensington, London, on the way to Harley Street for a private consultation with a neurologist. Was mostly pleased with how it went but was disappointed he declined to tap my reflexes long enough to observe the muscular spasms when the fuel in the affected nerves becomes depleted from the repeated tapping. Perhaps he did not hear me mention it. I lacked the ability to argue the case so I let it pass. Hopefully, it will now be NHS tests, but if not I shall have to pay privately for at least a drug sensitivity examination. At least he is prepared to go along with me unlike some others.
The high number of polite Londoners surprised me. Nice it was to behold. One lady even asked me if I required her help to lift my shopping trolley down a flight of stairs to the underground train. I declined as I could manage, and I had a relative with me to help anyway. My forgetfulness makes me not know what station it was though.
I fell down an escalator, at Kings Cross I think, soon after I boarded it, but remained upright when my bad concentration let the shopping trolley tip over behind me after the steps had converted into staircase mode and it was half perched on one. Some contents were ejected. It shocked onlookers who stared. If I had fallen flat I would have escaped unscathed because of my rubber padded motorcycle suit.
26 August 2005: Missed the Clacton air show this week because I wore myself out Tuesday visiting Beth Chatto's famous garden in Elmstead Market.
29 July 2005: The site is now working except for the search facility.
22 July 2005: www.newtoscience.com is temporarily down owing to a fault at the web hosting company (update 27/07/05, turns out I was using the incorrect password). Most videos are unavailable too for now.
2 July 2005: The second stage of my appeal about being misdiagnosed has failed.
12 May 2005: The brain scan man wants "perfect" bodies to compare to stroke victims so I said I would not fit the bill then. He added that Functional MRI is not used to diagnose conditions anyway. I was unaware of that. I had gone on so much about my condition that he said he did not know whether to have me now and that is when I replied with the subject of the first line. Stupid. I should have said have me because the doctors say I have no brain damage. He would not have minded it being a new illness if I had been diagnosed. (edited 26 February 2007.)
11 May 2005: About one month ago I was asked to volunteer for a Functional MRI brain scanning research project examining either hand or finger movement. However, I have not heard anything since. Maybe its because they have lost interest in me after learning of my illness' history. Be a shame if so.
20 April 2005: Stage 1 of my appeal has failed leaving two stages to go.
07 April 2005: What a lot of stick in the muds with all due respect to them:-). I emailed or faxed a number of neurologists at one hospital but received no replies. I wonder if I shall have better fortune elsewhere.
16 March 2005: Did eight kilometre electric bike ride without balaclava face protection the air was so summery at 17 to 18 degrees (daffodils are in in bloom). Just about managed it but it afterwards caused me to have to send an email full of spelling mistakes as the cold temporarily affected my movements/injured nerves in the brain via the cold breeze upon my face. The wind was behind me on return journey lessening the colds impact upon my bare skin.
14 March 2005: Saw a new GP at the surgery and asked for a private referral to a certain neurologist but she said it is unnecessary as the private doctor does not require one to see a patient. Only on the NHS is it mandatory to save it money from unnecessary referrals as the NHS is free. The GP is the gatekeeper so to speak. My appeal with the local health authority to see Prof. Claire Fowler on the NHS is still ongoing.
She said something about EEGs in reference to my 'probably' abnormal one in 1977 in that, if I remember correctly, they are not definitive in diagnosis and the next one can be different.
12 March 2005: My MP, Bernard Jenkin, replied enclosing an answer from the Minister of State, John Hutton MP. He suggests I contact the Association of British Neurologists about the list of Britain's neurologists as it is not held centrally. I have not contacted them before. With respect, one would think to help people like myself out and provide clout the government would speak to all relevant physicians automatically. If I become diagnosed I think they will change that. But, they are all listed here and I should be able to handle it with faxes. So its lovely jubbly then.
11 March 2005: Someone at the Department of Health viewed my web site early at 04.47. The division have viewed it a number of times this week.
08 March 2005: My Ned Stats report that The Department of Health viewed my web site early from 03.08 this morning, and once in the afternoon and evening.
I emailed the Health Care Commission to appeal about being misdiagnosed but cancelled it when I remembered I have to first wait for the final letter of my appeal to the local Health Authority. I actually received a final one last November but have since argued the case with them.
Took a long time to clean up in Paint Sop Pro a smudged photocopy of a letter of Dr. M. A. Barrie whom I had a private consultation with in May 1976. More neurologists' letters to follow.
07 March 2005: My consultant urologist refuses to do a private referral to a neurologist, as does my GP. The Department of Health viewed my web site again.
28 February 2005: My Nedstats reveal that The Department for Health has viewed my web site a number of times over the past several days re. my appeal to The Secretary of State for Health The Rt. Hon. Dr. John Reid MP.
Prof. Fowler's secretary rang saying the professor must have a referral from my GP in order to see me. All I replied was thanks for telling me. However, considering my GP refuses to do it she is obviously disinterested enough in my condition to command him to do it. Therefore, another "brick wall encountered, but I have other legitimate options in the pipeline. I hope that my past disbelieving doctors avoid developing mental troubles if I become diagnosed.
23 February 2005: Received a communication from the local neurologist. Since Monday I have discovered it was not him who put the kybosh on the referral to a specialist i.e. Prof. Claire Fowler, consultant urologist, after I was promised to see a neurologist by my local urologist, but it was the latter's boss and my GP who decided it during a confab. Talk about having ones hopes built up and then dashed. :-) A year and a half altogether from start to finish the referral took at the urology clinic. The next chapter in the saga to become diagnosed commences.
22 February 2005: Faxed some letters including a CC to Dr. Reid, Secretary of State Department of Health of a letter addressed to Prof. Claire Fowler requesting a consultation.
21 February 2005: Saw my GP and read my local neurologist's letter where he initially thought I should see Prof. Claire Fowler, National Hospital. London, bypassing him altogether until he discovered I am supposed to suffer from major psychological problems and so reckoned he had been "jumping the gun a bit" meaning I am not to be referred now. I thought my bladder tests had proven it has a disability but obviously not enough to see a neurologist. I am livid at not being sent to a neurologist. A letter strong but civil will now fly to my urologist asking him what on earth is going on.
My web site and email were down over the weekend owing to a fault with the server.
19 February 2005: My MP wrote and said he has sent my request for my case to be sent to all UK neurologists to the Secretary of State for Health Dr. Reid.
15 February 2005: Have just learnt of the brain's medial frontal cortex from the web, involved in volition and alien hand syndrome which I have problems with. Therefore, would like to have it examined by MRI Spectroscopy.
10 February 2005: I am not being referred to a neurologist but at least my GP believes I do have a waterworks problem and he said treatment could be drugs but I shall bypass that for now. Am about to request my MP to hopefully have my web site's URL sent to all neurologists in Britain to see if any believe me.
07 February 2005: The neurologist's secretary says he is recommending I see someone else and has written to my GP. Hoping its not a psychiatrist.
06 February 2005: Have still not yet received an appointment to see the neurologist after waiting two months meaning I am on low priority status. Endeavouring to expedite it I faxed the Chief Executive, Peter Murphy, on January 21 (accidentally dated 2004) but received no acknowledgement. I faxed my urologist on Friday of this week to see what he could do, and when I soon checked on its arrival by telephone his secretary told me he had already read it. Now that is service unlike when I faxed the neurologist on 31 January when I was informed by his secretary it had been 'put on the pile' of general documents he has to read which I hope does not mean a tardy perusal of it. There has actually been a letter he dictated a while ago in the pipeline re. the urologist's referral to be typed by the inundated stenographer so I shall have to telephone tomorrow to see if she has reached it yet. I failed to ask her this week.
Have not yet written to my local member of Parliament, Bernard Jenkins MP, after I wrote to the wrong one, Bob Russell MP, on 4 November, and I was told it was being forwarded to him (I had complained that my appeal to see a neurologist had failed at that time).
11 January 2005: Have just learnt that the neurologist I am to consult is the one I saw privately in 1989 who disbelieved me, but my bladder was working better then considering it suffered the relapse in 1992 caused by me over-speaking (because my injured mind nerves are connected to the aforementioned mechanisms as well as to the rest of the body it means one thing can affect another considering those nerves contain hardly any fuel to make the body work). I persuaded him to let me have a private MRI brain scan then which was negative. Am hoping upon hope that the positive bladder tests will be enough to convince him to investigate for the illness I claim to be suffering from.
10 December 2004: Hallelujah. I am being referred to a NHS neurologist by the local urology clinic. Good on them. Had a urine flow test there at about 3.50pm I think it was which was 159 ml over a two minute period but the machine finished the test before I was finished so I expelled a bit more than that taking three minutes in total. It was the first time I urinated since leaving home at about 1.15 pm for the appointment. In the hour and twenty minutes before the test I had consumed approximately two and a half litres of water. The ultrasound almost immediately after the test revealed a small amount remaining in the bladder. Must have been dehydrated then. I usually clear the bladder completely but my electric bike journey to the hospital had put a strain on the damaged mind nerves adversely affecting that area the same as happened on the journey to Harley Street in January 2004 for the same test. Otherwise it would have been expelled in less but not perfect time. I never thought of taking a photo of the printout (that proves how bad I think re. the brain damage) despite having the camera in my hand although one can see it partially on the video I took of it here.
04 December 2004: Emailed some people at the National Institute of Neurological Disorders and Stroke.
22 November 2004: An ME friend of mine said he temporarily gets energy to move a lot more whenever he receives enough emotional support. From my experience I postulated a reason for it that it is because at present the route that the fuel from the fuel tank the mind uses to move the muscles is damaged and mostly blocked. However, the physical effect of the emotional support somehow improves the blockade temporarily.
Another reason might be the route from the fuel tank to the mind does not receive enough oxygen seriously hampering its efficiency, but the emotional support then rectifies this somewhat - widens the capillaries? I hope to ask him tomorrow how he breaths. Thoracic breathing upsets the blood gasses. Abdominal breathing is the correct way which might help?
If it is a virus responsible for the blockade then perhaps the chemicals generated from the emotional support dampen its activity down sufficiently enough for the fuel to egress the fuel tank into the mind nerves in greater quantity.
I think the problem of blockade cannot be on the other side of the mind otherwise only a few muscles would be affected it seems.
20 November 2004: Emailed and faxed Prof. Alan Faden MD Department of Neuroscience, Georgetown University after surfing web.
04 November 2004: Stage 1 of my appeal at the local general hospital failed so I faxed a letter of complaint to my local MP Bob Russell stating that the NHS should, but with provisos to weed out charlatans and Munchausen's sufferers, give tests on demand whenever a patient claims to be suffering from a new to medical science malady doctors deem to be anatomically impossible.
26 October 2004: Emailed and received reply from Prof. Tony Bogaert Canada concerning a BBC World Service Outlook program 22 October he was interviewed on about a-sexual people which I once was.
13 October 2004: Had a 35 Kilometre round trip on my bike to dispose of a fence panel in my trolley at the local amenity tip near St. Osyth taking approximately four and a half hours including a meal and a one hour charge of the bike's battery. I enabled it to just about last out by pedalling a good bit. Called into Wivenhoe on the way back for black molasses and kelp tablets. Started raining - video 512Kbps or 56Kbps Dial Up version. Was bombed by a handful of conkers ejected from the top of a double-decker bus as it passed when cycling home. Nice to be wearing a helmet. Why cannot I have a meteorite land at my feet? They are valuable and the proceeds would pay for a private consultation with a neurologist. Come on God, you have plenty up there.
23 September 2004: Nearly caused a relapse of my condition from using the fingers greatly to grip the battens of a heavy 1.85 m square wooden fence panel struggling successfully to lift it high enough to slot into the concrete posts (I do not lift heavy ten pin bowling balls with my fingers in the holes for the same reason). Should have used ropes instead around those battens to grip which would have made me do it first time. I wore yellow rubber kitchen gloves. The finger and forearm muscles still feel peculiar and fragile hours later, and I have associated slight "electric shocks" in the body somewhat simulating an infection coming on. I refrained from videoing it partly because I was afraid people would think I was not ill if I could be such a he-man standing on top of a step ladder. However, when I do another I will record it for the www and hope for the best. I had actually arranged for a professional to come sometime and lift it in - I left a cancellation message on his answer phone.
17 September 2004: I would love to be given diffusion tensor imaging for my possibly unique brain condition - new type of functional MRI. Functional MRI is £1200 per hour private.
16 September 2004: Following the improvement of yesterday I spoke too much causing me to wake up several times in the night to urinate. Me speaking exacerbates it because my physically injured and exhausted mind nerves are connected both to my mouth and bladder.
15 September 2004: I think I did not wake up at all last night which might be unique for many years. I think I am on proper Flomax and not a placebo.
13 September 2004: The Flomax drug is not working yet if that is it is not a placebo because unusually I was asked by the doctor to sign a statement that I was taking part in a trial. Also, the pharmacist gave me them without my ticket as I had misplaced it after the place had closed; I had rung the bell hoping someone was still in. I do not think she had seen me before. For all she knew I could have been someone pretending to be me. A side-effect might be the tight head I have but it could be from dehydration instead. Had some realistic dreams last night though and was up urinating small amounts quite a few times between them, and most unusually I went to bed very early. I have been talking to myself too much and that always exacerbates the bladder. Dream 1/ I was living adjacent to the river at Abridge where I used to live in Essex and flood water had reached the level of the top of my bedclothes so I was in the dry occasionally as the level fluctuated around my bed and I was looking after a tortoise. I could not feel the water. Dream 2/ Was cycling at two hundred miles per hour along a straight path covered with water. Dream 3/ Attended an open air meeting at the Kingdom Hall where a male friend (whom I knew years ago) opened the meeting with prayer but he said it in a very offhand manner as if he did not care a less plus quietly mumbling some gibberish too.
10 September 2004: Visited local urology clinic on electric bike after a seven month wait! The doctor disbelieved my condition to be neurological because he said he is not a neurologist and would not look into my symptoms except he prescribed the drug Flomax (tamsulosin hydrochloride) for the bladder neck problem. I will see if it improves me generally. I incorrectly told him that Salbutamol did not improve me because I had forgotten it has improved or reduced my muscular spasms when doing pure voluntary movements. I showed him a short video of the spasms. I said he had my permission to laugh because they are funny. I have not published that one on web site yet. I will take the drug later - a small amount at first - because I bought beer on the way home and drank it and I want to feel clearly the effects. I briefly showed him my 80,000 word autobiography to demonstrate how much I believe in my condition but failed to ask to read it but he has seen my web site. My GP will not even refer me privately which means changing GPs. It is terrible they can be so close minded:-). I am tempted to believe that if we were in the fifteenth century they would not launch a boat to establish if the earth was round or not. They would say it is flat and that is that. I consumed a nice cheap meal in the hospital restaurant of Red Thai chicken and rice with a drink of hot chocolate. On the way home I visited the Highwood's country park but became confused about the cycle paths so had to double back on a no cycling one and never ventured out of the trees. My bike battery was being used up too much so I decided to make sure I had enough juice to get home and so dispensed with viewing the park's scenery.
My Sony PC108 video camera is busted in the side screen back light display department in that it has gone off. I have taken it in for repair. It may have occurred from dropping it about three times at the Clacton air show in August when it kept falling out of the bag around my neck. It went intermittent soon afterwards before going off virtually completely.
26 August 2004: Visited the Clacton-On-Sea air show by bicycle and train. Suitable weather but partially cloudy. I stood up for a long time because I was interested enough in the activity of videoing and photographing the aircraft whilst conversing with a friendly man who was an ardent visitor to such events; he started the conversation and he can momentarily be seen behind me wearing the blue cap. It has taken a couple of days for my legs to recover from that particular exertion. Next time I shall sit on the beach and rest them and my mouth.
31 July 2004: Went to Manningtree and Mistley by electric bicycle.
23 July 2004: I cancelled my appointment to see a consultant psychiatrist for another opinion at www.psychmed.org.uk because they are unable to give me any medical tests. The psychiatrist told me on the phone that she will soon discuss my case with another psychiatrist who is also a neurologist. Sounds like the perfect type of doctor for me considering one must be mentally ill to acquire this organic disorder in the first place.
07 July 2004: Prof. Vinod Goel informed me via email that his brain MRI scans do not detect brain pathology so would be no good in my case. I had been contacted by his department to volunteer for the brain scanning of human reasoning in London but have been turned down as I do not fit the bill. fMRI examines the thinking and mine is basically paralysed a lot and hardly works the rest of the time so perhaps it might reveal a defect in my brain? However, when I had a SPECT scan in 1989 at King's College Hospital, S. London, on a schizophrenia research project where I was required to think during it which I did successfully, the doctor initially said my scan looked abnormal but later changed his mind. Therefore, it might turn out the same with fMRI.
The lung difficulty is much improved and I am on no inhaler or antibiotics except the herb raw garlic.
I strimmed the front lawn today before it pored with rain after my sister encouraged me enough to do it. It has proven there is still a leak in the garage roof in a corner. I think the roofing felt is intact meaning the wet could be from the concrete edge of the roof above it and running down behind the felt attached to the barge board. I always attempt to fix leaks.
05 July 2004: Asthma is better but not cured. GP prescribed tetracycline antibiotic but which I have decided to keep for emergency use only. In the meantime the treatment will be the herbal decongestant garlic instead. Awesome statement was uttered by GP today. He said it is anatomically impossible for the brain to become exhausted in the way I described happened to me. Therefore, one must conclude it seems a doctor who would believe me must be even rarer than hens' teeth.
30 June 2004: I have vertigo which prevented me from arising from bed for over one hour. It happened soon after I awoke when the tightness from the previous day behind my eyes suddenly weakened. I must not move my head quickly nor ride my bike. I attribute the dizziness to the salbutamol sulphate inhaler dose (one puff) on the 28 June affecting my main neurological injury. I am certain the salbutamol was responsible for me walking slowly, the periods in bed, throbbing headache plus a dry mouth leading me to discontinue it. Latest news: beta-agonists may actually boost risk of deadly attacks and cause heart trouble. The wheezy chest is improved but only so long as I keep hydrated because even slight dehydration exacerbates it and drinking fluid abates it to a large extent. This is a bizarre symptom of my main neurological injury. Obviously I should have asked the GP on Monday for a referral to see a chest consultant to discuss it but I can be "backwards at coming forwards" as the saying goes. However, I have a consultation soon with a psychiatrist whom I hope will suffice instead.
29 June 2004: After a good nights sleep I awoke feeling restless and had symptoms of a temporary head cold, bronchitis, and a head ache located behind the eyes. The latter might have been a symptom of the high intensity of the light at the coast yesterday on my eyes that are sensitive to bright light from the neurological injury. To establish if the drug of the asthma inhaler was instead responsible for all the symptoms I shall have to use it again. The rough jacket I rubbed against my arm yesterday could also be responsible for most of them.
28 June 2004: Consulted a GP at my local surgery first thing after the asthma relapsed a certain extent during the night and he diagnosed via a stethoscope the remnants of it as such and prescribed a salbutamol sulphate inhaler for the first time. One spray eased it but the drug appears to have made my eyes stiffer than usual in the focusing department. Good thing I decided to go when I did otherwise the asthma might have dissipated before I could have proven it apart from the video evidence backing me up which I handed to the doctor on a CD Rom. I had been hoping to prove it since at least the early nineteen nineties when it became a symptom of my main neurological injury. I was referred to a local chest specialist then who failed to detect anything wrong only because he failed to listen to me breathing for long enough when I was attempting to make the symptoms appear by touching a rough texture. I could not ask him to carry on because I was unable to do any voluntary movement, so I had to let that opportunity go. I did all movements then spontaneously. My left forearm's skin has nearly recovered - ref. the sensitive touch sense, a symptom of the nerve damage where I even have to avoid walking more than a few steps barefoot upon a carpet - when this morning to try and prove a link between the asthma and exposure to rough textures I rubbed the inside of it against my rough jacket a few times but it only worked a little. The GP told me to refrain considering I maintained it could exacerbate the asthma.
If I am to become diagnosed I must remedy my reluctance to summon a GP to my abode when it is necessary like it was yesterday. They would be annoyed if they knew I had let an opportunity to become diagnosed slip by.
I went to Clacton-On-Sea by train and ate in the Pier's Jolly Roger restaurant, played a driving game and did miniature ten pin bowling. I forgot to take my camera with me and did not want to purchase a disposable one.
27 June 2004: 0:50 am GMT. Have just experienced my worst asthma attack of this neurological illness and suffocation made me start to panic. I judged it was alcohol and dehydration combined to aggravate the neurological damage to cause it but no doubt it was exacerbated by anger at doctors and God over my predicament at being misdiagnosed for so long (sorry, Jehovah). I never experienced asthma growing up. It is abating now that I have accomplished an emergency re-hydration. Normally they are rare. In the past touching rough textures has also caused them. I should have called the doctor out but I was afraid it would have cleared up by the time he arrived making me look a charlatan. I am stupid like that. If he had seen it it would have helped in my quest to become diagnosed. I have just thought I could have summoned an ambulance instead which would have been here in ten minutes. Too late for that now though. The following demonstrates the severity of my forgetfulness in that just before the asthma started to become a lot better I remembered that I could video it and so I did, otherwise if I had done it earlier it would have been dramatic. See the video of how noisy it was at 2:0 am GMT. At 3:25 am GMT the asthma has nearly gone. The feeling in my chest at the time of the attack was of a band squashing my lungs. Coincidentally, on BBC1 TV the previous evening I had seen a Jonathan Creek crime sleuth drama entitled The Coonskin Cap where a police lady was murdered by suffocation owing to her booby trapped bullet-proof vest fitted with a modified portable blood pressure measuring machine that constricted her chest (move mouse over the Solution at the base of the BBC web page). It was happenstance but a psychiatrist might say the programme made me imagine the asthma attack but the evidence of the video I did of it backs me up. Anyway, I never remembered the programme during the attack and have just thought of it at 8:51 am GMT. If I had thought of it I would have shown my chest was totally clear of any similar appliance that could have falsely produced my respiratory difficulty. The doctors will just have to trust me that I never faked it although I hope I revealed enough bare chest to remove any doubt they could have. One might declare I should keep quiet about the TV programme, but a doctor could have seen it and made the connection anyway. I have the asthma only slightly now at 5:15 pm GMT, and I slept last night afterwards.
5 June 2004: I dreamt I had finally convinced the doctors to look for my condition. When the doctor who told me the good news asked what my reaction would be if I were proved right, I replied, "Say a prayer of thanks, and tell the doctors not to worry about previously misdiagnosing me."
03 April 2004: Approximately this time applied to Institute of Psychiatry, London, to volunteer as a guinea pig for brain scanning but it looks like no one is interested in taking me on.
03 April 2004: My appointment to see the urologist has been postponed by the hospital from July to the end of summer because there is only one clinic a week now. One has to have the patience of a saint with the NHS sometimes.
13 March 2004: The main urological consultant thinks alpha-blocker drugs may be of value for my bladder - the symptomatic approach - instead of surgery which I would never accept anyway considering I am not yet diagnosed and it has improved on prescribed drugs before. I suppose I could try alpha-blocker in case it happens to improve the main neurological condition. Alternatively, if it produces a unique and visible severe side-effect owing to my massive sensitivity to certain neurological drugs it will go towards proving the main illness. I do not think I will take the alpha-blocker just to lessen the frequency of micturition because I can live with it awaking me several times nightly etc and drugs can produce permanent damage.
I wish that my consultant would refer me to a neurologist.
08 March 2004: Unsuccessfully applied for brain scans on research projects at Aston University, Birmingham. They only see subjects referred by medical consultants as part of closed clinical trials.
05 March 2004: Having read the report of my recent video-urodynamics test it is plain to me that it was not performed in the correct manner to detect my particular condition although it was done properly to reveal known ailments. The bladder was filled up too quickly via the catheter which made it contain more than usual compared to when my body fills it slowly. Typically I pass 100 to 200 ml but it actually varies less to more than that. The bladder test showed it to hold 500 ml which I never do normally. I quote the last paragraph of the report, "The features here are those of a poorly compliant bladder with a good bladder capacity voiding with good pressures at low flow rates due to a mild obstruction at the bladder neck level." I maintain that the obstruction is weak muscles from the main neurological illness originating in the head. The same test performed eleven years ago also showed it appeared I had a bladder neck problem.
24 February 2004: My abnormal video-urodynamics test result is inconclusive i.e. not faulty enough to prove one way or the other whether I have an organic neurological disorder or not. That is a shame. I jumped the gun thinking it had proven a neurological defect. However, the main consultant is to decide the verdict. The same test I had eleven years ago was inconclusive too but the same main consultant then said it was really the only investigative tool he could perform. Afterwards I was offered another one when I complained it was performed incorrectly but I refused it because of being too ill. He should subsequently have prescribed a certain brain scan and a drug challenge test but obviously he was unconvinced about my claim of the new illness.
21 February 2004: My driving licence application has been refused on health grounds. I saw no one for the assessment but the medical expert disbelieves the true cause of my aetiology otherwise he would have arranged an interview to attempt to diagnose me and make a name for himself. I was hoping to use a 50cc scooter to venture further twice as fast, and avoid having to cycle up hills considering my electric bike lacks enough oomph. I am too ill to drive a car so would not have attempted that. I was confident to negotiate the roads on a scooter considering I have managed for several years cycling and nearly two with the electric one. However, if I suffered a major accident I would probably not survive it owing to having the exhausted and damaged senses overused to a too injurious level. Consequently, it means I am both brave and foolish to be on the roads.
I went on a thirteen mile round trip this week on the electric bike to a place near St. Osyth and took these four photos of an empty creek on the way back. My armoured Dainese motorcycle clothing protected me from the rain.
8 February 2004: I checked on the result in more detail today with the Harley St. clinic re. the bladder pressure test considering I have not yet heard from my local consultant who received its result, and I was told it was not greatly abnormal. Therefore, I hope it means it cannot be attributed to a psychiatric cause although I have no reason to know for sure if that is how the result can be interpreted. My bladder weakness is definitely from the nerve damage, the nature of which I have described in this web site.
22 January 2004: I was given a neurological video-urodynamics test at 136 Harley St., London, W1, today and the radiologist said it proved I am suffering from a bladder disorder. This is the first time that anything neurological to do with the main illness has been concretely proven. That elated me somewhat but I would have been more if I had asked him if I would be seeing a neurologist in future for it but I did not. I should also have asked him what disorder he judged it to be. I hope it leads to me finally becoming diagnosed. Watch this space.
See 3.01 Mb wmv video of journey to clinic.
I was due to have it free on the NHS in January 2004 after a nine week wait, but the X-Ray department shut down for alterations until May and I could not wait any longer languishing upon another hospital's months long waiting list. Consequently, I went private and had it done within three weeks. The test procedure was a mighty lot less traumatic than the same test in 1993 which I claim was bungled in a certain way by a clearly inexperienced operator - the reason why is that test was new to the hospital and I was one of the very first to have it. I was told the 1993 result result was inconclusive. I complained that I thought it was improperly done and was offered a repeat test at any hospital I chose but I refused it because of having been made too ill by the unnecessary lengthy and painful procedure affecting my damaged nerves to feel able to safely have another one without suffering a relapse of the main illness until recently. However, I am kicking myself for dallying so long and I think I should have "bitten the bullet" and chanced it way back then. However, it may have been the right thing to wait until now considering the bladder functioning has altered for the worse in one particular way since then. My bladder became worse in 1992 prompting the test in 1993, and that relapse was caused by me speaking too much which further damaged the link between my mind, body a bit, but to the bladder a lot. That relapse was accompanied by three weeks of night sweats owing to the affect upon the nerve damage. Maybe the test prior to 1992 would not have revealed a problem considering psychiatric drugs had improved the damage to my bladder's severe disability from march 1981 which had first started in September 1980 from again having spoken too much where for weeks from then on I was urinating once every few seconds but less frequent at night when sleeping. I could also not speak nor communicate at the time which mostly continued for six months. Then I went into hospital and improved more in the bladder department from psychiatric drugs than I had done before naturally at home. Consequently, the bladder condition was not bad enough to be noticed by the nursing staff even though I complained about it at least once. Also, when I was first admitted I had not drunk liquid for three days. However, when I improved in hospital I was urinating about once every ten minutes during the day whilst sitting in the corridor of the ward (it was the quietest place I was allowed to go by the staff and my room at that time of day was out of bounds to me). I kept it hidden because of a psychiatric quirk affecting me making me see the situation with the staff as a me and them state akin to a Nazi prisoner of war camp where a prisoner (me) keeps a lot secret from the guards in order to survive. Consequently, I used to urinate in plastic drinks cups inside my trousers (I was unable to walk and used to get around on my bottom) scavenged from waste bins and afterwards secretly poured down holes in the floorboards; I did not possess the energy to keep visiting the toilet considering my muscles were weak from the nerve damage otherwise I would have done it in the proper place. I could not see the manner of disposing of it was disgusting and unhygienic and this was because of the mental illness state I was in caused by damaged mind nerves from the main illness. The other patients on Myland Court West, Severalls, Colchester, Essex, mistook the resulting smell wafting through the place as me not bathing frequently enough. It was made worse by garlic capsules I was consuming. Therefore, patients, please accept my apologies. At night I thought the staff would have refused to give me a urine bottle if I had requested it maintaining I should use the toilet instead. Consequently, in the mornings I would secretly shuffle the containers along the floor to the toilet for emptying that I had used during the night. A staff nurse saw me once and told me to use a proper bottle instead at night which I complied with from then on.
18 October 2003: This month I applied for my driving licence. The renewal was refused in 1976 for health reasons (I drove a car for seven years up to the first week of December 1974). This will enable another medical review of my case. Two specialists whom I wrote to in the past about my condition are on the Government's medical review panel. With respect to them, let's hope they "scratch their heads" harder this time and believe my aetiology.
04 September 2003: I added an EEG result from 22/03/79 to Chapter 6 of this web site. "...raises the possibility of subacute sclerosing leucoencephalopathy." Am not getting anywhere with the doctors for them to do a private referral to a neurophysiologist. Therefore, I may have to appeal to the Secretary of State for Health.
26 March 2003: I saw another local consultant psychiatrist on appeal but she said that my belief about my illness is a delusion and she offered talking therapy for it which I refused.
20 January 2003: I had an unproductive consultation with a local psychiatrist who refused to give me any medical tests, but offered me schizophrenic medication which I refused. He tested my knee reflexes after I insisted he do so, but the resulting three second duration sudden and violent leg muscle spasms that occurred simultaneously in both limbs engendered by the last of the taps to my patella tendon unimpressed him. He also was unaware that I had been diagnosed as suffering from Asperger syndrome by the Maudsley Hospital in 1999; and my GP had not heard of it officially either, I discovered on recent visit to him.
21 October 2002: I received Lori Hartwell's new book Chronically Happy (see 24 February 2002 above) in which I am mentioned on pages 40 to 42. There has obviously been a miscommunication somewhere because I was diagnosed with allergies in 1982 before the Internet. However, I discovered magnet therapy via the Internet which I believe has significantly improved part of my eye trouble (see 28 August 2001 above).
05 April 2002: A
lady emailed me with the following observation on why doctors misdiagnose: "The problem is in this
country, unlike America where I come from, is that people are not supposed to
have any idea or thoughts about what is wrong with them. If you express ideas of
your own about your own illness it is viewed as a psychological symptom. The
same is true if you seek independent opinions outside of the usual system, which
is that a GP refers you and then you wait forever to see some arrogant
consultant for about 5 minutes. So you are damned if you don't seek help for
yourself and damned if you do.
The other problem is that once something has been "established" about you, even though it is wrong, then very few other doctors want to disagree with what has been said before. They all collude with each other and their ego has much more importance than the patient's health. They are more concerned with not wanting to contradict what the other doctor has said than about helping the person who is ill."
I shall send the above to my GPs.
24 February 2002: I signed a consent form to allow my story to be incorporated into Lori Hartwell's forthcoming book entitled Chronically Happy. It would not have happened without the Internet.
06 September 2001: I have been put me onto a list of volunteers of a research establishment for possible brain scanning re. Asperger syndrome. I discovered surfing the Internet.
28 August 2001: My eyes have improved lately in that I can now deliberately keep them shut for a long time without causing a relapse for the first time since 1976 (more in Chapter 1). This improvement to my brain may be attributable to Roger Coghill's powerful magnets I have been attaching to the hair of my head (brain therapy), or it could be owing to cycling more where the damaged nerves could have benefited from the exercise. The longest distance I have cycled to date in one go is now three and a half miles; the higher geared bike I now possess enables me to travel this far because my legs move around in circles more slowly compared to my previous lower geared machine, thus my mind concentrates less than it did before on how many times my legs are revolving - my damaged mind can only safely allow my legs to revolve a small number of times at any one time without causing a relapse from its little remaining fuel becoming depleted more quickly by the exercise than it can be replaced or recycled.
21 August 2001: Faxed two neurologists at a hospital in the next county. I noticed in the afternoon that someone had accessed my web site via the National Health Service, but one week later I have received no replies.
29 June 2001: I had another unsuccessful attempt to volunteer for free brain scans at the Welcome Dept. of Cognitive Neurology, London.
21 June 2001: I asked Dr. Goran Jamal if he could persuade my GP to refer me to him on the NHS, but he could not do so as I live beyond the catchment's area of his clinic on the National health service. However, he said he would see me if I paid for a private consultation, but that is not possible at present. Therefore, will have to decide later if it is worth the financial risk.
01 June 2001: My GP psychogenically dismissed my inability to balance upon one leg with my eyes shut owing to me 'having had every medical test under the sun.' It made no difference when I revealed that I had yet to be examined with other tests. He also disbelieved me to be suffering from Asperger syndrome. I ended up telling him that my condition had conned all of the doctors into them maintaining it is psychiatric. However, Dr. Vicky Rippere is alone in believing it could be brain damage. My GP reckoned my religion would help me recover if I were to do more in it. I had to lay on the floor of his surgery room for several seconds after my strength had been temporarily removed by me just thinking about performing mental arithmetic at will - me performing deliberate thoughts, rather than doing them when interested, briefly removes all of my strength. I added that the bizarreness of my condition would make it not look misplaced in a fantasy Star Trek movie.
I wish doctors were more open-minded as it would be easier for me to become diagnosed.
12 February 2001: Wrote to consultant psychiatrist Dr. Jeremy Holmes who was my doctor in the Maudsley Hospital, London, in 1977 to tell him of my web site and diagnosis of Asperger syndrome in 1999. In 1977 he was puzzled by my unusual symptoms which made him unable to make a definitive diagnosis. I wrote to him once before in 1991.
08 February 2001: I have so far received a small number of replies to my aforementioned e-mails. In future I think it would be a good idea for me to include medical doctors as well as people conducting medical research into nerves.
05 February 2001: I have been e-mailing staff at the Institute of Neurology, Queen Sq., London, UK. Also, to members of Institut Curie, Paris, France.
12 January 2001: I e-mailed the staff at The Cambridge Centre for Brain Repair, University of Cambridge.
10 January 2001: I e-mailed the staff at the Psychology Department, University of Essex.
09 January 2001: I e-mailed the staff at University of Oxford Department of Psychiatry.
05 January 2001: I e-mailed forty-two staff of the Oxford Centre for Functional Magnetic Resonance Imaging of the Brain, Oxford University Department of Clinical Neurology to volunteer for any research projects.
14 December 2000: I e mailed Professor Malcolm Slaughter and Christopher Thaler but used their wrong addresses, so shall have to discover the new ones. Also sent e mails to all of the staff and faculty, Department of Neurobiology and Behavior, SUNY at Stony Brook, USA
24 November 2000: Earlier, I e mailed two of this years three winners of the Nobel Prize for Medicine, brain pioneers Prof. Paul Greengard and Prof. Eric Kandel. Also e mailed Prof. Roland Levinsky and Dr. Michael V. L. Bennett. I have received no acknowledgements so far.
23 September 2000: I experienced an unsuccessful attempt to get another local GP, whom I wrote to, to refer me to a specialist.
12 August 2000: Television warned of Munchausen's Syndrome sufferers feigning illness in chat rooms on the Internet.
4 August 2000: I discovered it to be too expensive to privately consult Dr. Goran Jamal.
6 July 2000: E mailed Prof. Semir Zeki, University College, London, to see if he has any research projects I could volunteer for. We previously corresponded once on same subject in 1989. (Have not heard from him as of 1 August.)
20 June 2000: It seems I have now tried all of the GP practices in my area for a NHS consultation but without success although I have not contacted every doctor in some of them. The Patients' Association says it has to be private consultations for me if I cannot get a GP to refer me to a consultant on the NHS. However, I cannot afford it.
19 June 2000: My request to have a doctor at a different local GP practice refer me to neuro-physiologist Dr. Goran Jamal on the NHS failed owing to my location now being outside their catchments area.
26 May 2000: I e mailed today, about my web site, Prof. Frackowiak (whom I communicated with by snail mail a few times years ago), Institute of Neurology, London. Also, in Britain, I e mailed Dr. Stephen Rose, Dr. Geoff Raisman, Dr. Tim Bliss, and Dr. David Trentham. Interestingly, three of them work in a neurological research institute located in the same road that hosts the British branch office of my religion i.e. the Jehovah's Witnesses, The Ridgeway, North London.
I have not had the energy to see my GP since the 25 February entry below.
21 May 2000: No replies yet to the 9 May email entry. Also, e mailed at UCSD (a university ) in the States about my web site, Dr. Christenfeld, Prof. MacLeod, and Dr. Ramachandran who does television programmes on neurology.
9 May 2000: E mailed Dr. M. Brammer, Institute of Psychiatry, London, for any research projects, and also Dr. Sharma there on the 7th.
3 May 2000: Apologies for there being no more news at present. Please try again later.
2 March 2000: A lowest dose (5 mgs) nicotine skin patch I tried on Monday for four hours to see if it would cure me worked in respect to temporarily stopping my involuntary movements, and maybe it is also responsible for slightly decreasing the sensitivity of my eyes when closing them. It was not a pleasant experience with it producing increasing nausea that forced me to curtail the experiment, plus it increased my resting heart rate to 90 beats per minute from 66; and it has taken three days for both the feeling of the nicotine in my body and the distasteful smell of it in my nostrils to nearly dissipate. What made me try it was the Intelihealth e mail I regularly receive on latest health news where one indicated that nicotine, divorced from tobacco, helps sufferers of Alzheimer's disease, Tourette syndrome (tics and uncontrollable swearing) and Parkinson's disease.
25 February 2000: Unable to get any of the other GPs at the practice I attend to refer me to another specialist, but I shall try my GP once more about my weak bladder caused by my condition.
11 January 2000: Dr. Vicky Rippere wrote to me enclosing a Guardian newspaper article about Asperger Syndrome. I did not identify my symptoms with the case history given. Dr. Rippere says she is not convinced I am suffering from it, and added that if she were still practicing as a doctor she would investigate my case with the immunological approach again. She also pointed out that the level of IgG antibody measured in my cerebrospinal fluid in early 1977 was raised but the doctors were at a loss to its meaning. Perhaps it means I have inflamed nerves from the brain damage which are stimulating the IgG level to be up?
6 December 1999: Had the second meeting of my Maudsley Hospital appeal in London. It failed, although the doctor said he will write to my ex. local consultant psychiatrist and G.P. to see if they are willing to refer me to another doctor.
Read the result of the appeal in the letter from the Chief Executive.
We had two green carrier bags stolen by another passenger on the way home on the train to Colchester when I had put them on the luggage rack above our heads. Fortunately, the total value they contained was only £7-25p i.e. one Zest magazine, a transparent purple cosmetic bag, an orange drink and two Blueberry body deodorant sprays. Another passenger said they saw a grey haired man take them. To the thief, please repent, return them and I shall forgive you.
4 November 1999: My local psychiatrist and I have agreed not to meet anymore as we disagree about my aetiology. He still believes me to be suffering from Asperger Syndrome. I forgot to ask him about the IQ test.
My local consultant neurologist replied to my letter where I asked him to view my web site. He said he will do it, but at the moment still disbelieves me, and he stressed he did not want us to enter into a dialogue again as we had corresponded several years previously about my condition when I had one consultation with him.
15 October 1999: The first stage of my Maudsley Hospital appeal has resulted in an invite to see another doctor there whom I wrote to some years ago.
30 September 1999: I saw an Asperger Syndrome specialist owing to the Maudsley psychiatrist, whom I met in June, believing my condition is this syndrome (a form of autism) with intermittent psychotic episodes. Some of my symptoms do resemble it, although one differs markedly in that my sensory problems are dramatic, whereas in Asperger they are not so bad. Consequently, I was offered the antipsychotic Clozapine, but I refused it.
I demonstrated to the doctor a positive Romberg's sign (see above paragraph) which he just said was 'interesting', and I hurt my shin on a chair when I toppled over. Autistics can be insensitive to pain. He might be giving me an isometric test after I requested it, but having looked in the dictionary it seems it might be contrary to what I want i.e. a neuropsychological assessment for brain damage e.g. IQ test. Also, I maintained I would always believe I have brain damage despite every test proving negative.
A person emailed me in April who reckoned I am suffering from sub clinical hypothyroidism. However, the doctor said my temperature range was normal i.e. 36.3°C to 36.75°C.
13 August 1999: I sent off my appeal to the Maudsley about being misdiagnosed. Also, I started the antipsychotic drug risperidone on Monday (been on the market for three years) taking a small chip of a 2 mg tablet daily to see if it improved my neurological injury like some other psychotropic drugs have done to me in the past. However, I do not think I shall continue with it because it tightened up the top of my head making it somewhat harder to think, and caused intermittent uncontrollable small rolling type movements of some muscles - particularly my hands and fingers. I am concerned, too, that the drug could exacerbate my condition. Perhaps it will be better to first become diagnosed rather than guess at a cure in the meantime.
Re. December '98 above: I think I have completely forgotten to demonstrate this Romberg's sign to my doctors. My psychiatrist never replied to my letter about it either. The symptom has returned so that I immediately topple over again when I am balancing on one leg with my eyes closed.
22 June 1999: Finally got to see the Maudsley Hospital psychiatrist today after many months of waiting. Regretfully, I understood her to say that she believes I am schizophrenic (but see 30 September bulletin which says the diagnosis was Asperger's syndrome) and offered me Clozapine medication for it. I might try it, though, in the hope it will improve my neurological injury but I shall probably be too sensitive to it to be able to take it. My local psychiatrist will inform me what one it will be. So, it is back to plodding on with the WWW to try and become diagnosed and writing to neurologists to see if they are interested in seeing me.
11 April 1999: I faxed the famous neurologist, Dr. Oliver Sacks, (Awakenings movie) about my condition for the first time after seeing his web site. It is highly likely he replied by fax but I could not switch my machine on quickly enough to receive it before the connection was dropped, and I have not tried to contact him since.
11 March 1999: I had a routine consultation with my psychiatrist at the hospital who maintained that he would do my Maudsley referral letter within the next week. The reason for the delay is that he had put me on a low priority owing to a backlog of work.
11 February 1999: To try again for research projects, I faxed a professor of psychiatry at the Institute of Psychiatry, S. London, whom I had a consultation with in 1990 at the National Hospital for Nervous Diseases (the Maida Vale Hospital, London) and who knew me from 1977 when she worked at the Maudsley Hospital next door to the Institute of Psychiatry. In 1990 she diagnosed me as suffering from the after-effects of schizophrenia, although she was not sure enough to put it definitively in writing.
25 January 1999: I faxed a professor of psychological medicine at the Maudsley to see if I could be accepted for any research projects. I had already asked him, unsuccessfully, in 1995. His reply is that there are no suitable projects for which I can be accepted for.
20 January 1999: I faxed the chairman of my local mental health authority to get my psychiatrist to let me know how he is getting on with my Maudsley referral. The Chief Executive replied the following day saying he would look into it and let me know. He later informed me that my psychiatrist is in the process of doing it.
16 January 1999: I posted a notice on MGH Neurology - Neurology Web-Forum under General neurology (and also under Traumatic brain injury). Had one reply so far which advised me to, 'Locate a research/teaching hospital with a neurospeciality and go for it'.
December 21 1998: The hospital doctor who did my March 1994 SPECT brain scan telephoned me this morning concerning my query last week about it (see that result in chapter 7) and whether an experimental serotonin detecting SPECT scan would diagnose me. Last week he put me onto a doctor at the Institute of Psychiatry, London, who is doing the research into SPECT/serotonin scanning, but he said he could not give me the test. Also, a colleague of his he referred my e mail to who deals with tiredness (but I do not suffer from that) said he could not help me either. I may have to wait for the test to become a diagnostic tool before I can get it, but I hope I do not have to pay privately for it then.
I found out about the serotonin detecting SPECT scan this month from my ex Maudsley clinical psychologist who sent me two newspaper cuttings about how this test has proven that the illegal drug Ecstasy damages nerves. She says, therefore, that if one drug can be shown to damage brains, then there is no intrinsic reason why a different one could not do the same.
December 20 1998: I sent an e mail to a neuropsychologist in the States.
December 1998: I have just discovered via the Internet that a neurological test exists called Romberg's sign, where one cannot remain upright when standing erect with the feet together and the eyes closed. Last week, whenever I attempted this, I would almost immediately topple over because my injured mind nerves were unable to work enough to make me remain upright. However, today, on the 21st I have improved enough so that I can now do the foregoing without falling over. I think that the reason why I can do it now is because my mind has recovered from me speaking a lot once recently. The tightness in my head that the speaking a lot produced has now lessened thus enabling the electrical signals in my nerves to flow better, it feels. Romberg's sign happens in tabes dorsalis which is caused by syphilis, but I am not suffering from that. I am awaiting a reply from my psychiatrist after faxing him about it, but I shall have to notify him of my improvement - See 13th August update below.
Tabes dorsalis - Syphilis affecting the posterior columns of the spinal cord which carry the sensory fibres from the trunk and limb. Sometimes it is associated with general paralysis of the insane (GPI) when the syndrome is known as taboparesis.
Autumn 1998: My psychiatrist says he is going to refer me to the Maudsley again for another opinion. I am still waiting in December.
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