I Have Returned!

I know I said that my last video would probably be the last one I made, but I'm back with the latest instalment of my ongoing saga. Still searching for answers, still as confused by my illness as ever!

I found a site some of you may be interested in. I forgot to mention it in this video. It is run by Dr Jon Stone, who works with our old friend Dr Michael Sharp of 'ME is all in your head' fame. It is all about 'functional' illness. Or what was called conversion disorder. Here is the link http://www.neurosymptoms.org.

I did leave a message on the sites guest book with a link to the article he wrote for neurologists, in which he basically tells them to use the term 'functional' rather than 'conversion disorder' as it is more 'acceptable' to patients and makes managing them easier. It has nothing to do with a change in belief in what causes as yet unexplained neurological illnesses. He and his colleague Michael Sharp still think functional disorders are psychiatric. My post was quickly removed! This website is about semantics not about redefining how conditions that science cannot yet explain are viewed.

Read through the website and see how closely it matches definitions of ME/CFS . Try leaving a comment on the website's guest book. It may stay there a few days. but only comments that agree with the views of the website are left. After all we wouldn't want those poor feeble minded people who have abnormal illness behaviour to doubt the good doctor - would we?

Category:

People & Blogs

Tags:

• me/cfs
• dr jon stone
• pls

[Bluebottle83]

Bless you Paul, I wish you a proper diagnosis soon.

ME/CFS is just a waste basket diagnosis - CFS =Can't be Fagged to Send you for tests.

I don't believe that those of us diagnosed with it all have the same illness, but I do know that most of us have a very real physical illness.

As long as corrupt members of the psychiatric profession who work for the big insurance companies keep pretending that we are somatising, whilst taking all funding, we will never have effective tests or treatment

[kaazoom]

I totally agree. ME/CFS is a waste basket diagnosis. I had a phone call from the local hospital on Tuesday offering me an appointment with yet another neurologist on Monday. it came totally out of the blue. Very unusaul to get an appointment with so little notice. i am trying not to get my hopes up too much, but it would be good if this one looks at me objectively rather than just following what is on my notes. I'll make a video about what happens sometime next weel.

Paul

[catimini34]

20 years before the doc found I had MS ! And now the neurologist don't understand why I refuse to be under a so "hard" medicine (I had 5 years of psychiastrist medicines for nothing ! when they though all my troubles were in my head !

Now it seems I'm in an, hurry to start Copaxone .. BUT I'm so bored with all the traditionnal medical solutions ... I'm afraid about my illness that is coming more active but I'm even more about the doctors ! as if they were not able to just hear me !

[kaazoom]

Some doctors are trying to say that with the advent of scans, misdiagnosis is a rarity, I am not convinced. I am sure that over reliance on scans will lead to more misdiagnosis as there are a number of conditions that just do not show up on scans.

[lednugenna]

interestingly at the bottom of the guest book page they state that you are not to leave negative comments . Weird

[kaazoom]

That's new! It looks as if others must have done what I did. The only way to get 'cured' from 'functional' neurological symptoms is to admit you have wrong illness beliefs and think positively! So being challenged and having patients question his explanation isn't something that Dr Stone would like.

[sillygoose61]

Paul, if I win the lottery I would have great joy giving you the money to fly to the U.S. and see a neurologist over here. My neurologist in Texas has more knowledge in his little pinky than the sum of the neurologists that you have seen. I hope your luck turns around quickly with the neurologists you see in the future. Deb

[catimini34]

Besides, no neurologist doctors don't always think about advicing to contact a specialist. In France we have to go first to a "general doctor" ... the first time I saw a neurologist it was in 2007 ! I have MS since 1988 !

[heatherwho]

Glad you're back! Keep researching... even if people think you are a hypochondriac. ;-) It took over 3 years for me to figure out that the "stroke-like event" that left me with many neurological problems really WAS a stroke! My family has a history of migraines - they restrict blood flow to the brain. A migrainous stroke only leaves lesions about 55% of the time!!! Every time you have a migraine, new symptoms can appear, or existing ones worsen, depending on the area of the brain affected.

[appleby69]

I say that because my Mum's NHS doctors thought she was a hypochondriac or couldn't figure out what was wrong with her, until she died of it (at 70), then they realised it was a cerebrovascular condition. The brain is still a mystery, certainly for the NHS.