Visit To Neuologist and Neuropsychiatrist - Back To Square One?

A lot has happened since my last video. I have been back to the National Neurological Hospital in London twice in the past month. First to see the neurologist, and the second time to see a neuropsychiatrist. Neither were a positive experience. Both left me feeling worthless and powerless.

Category:

People & Blogs

Tags:

• psychogenic
• me/cfs
• graded exercise therapy
• conversion disorder

[Thatgirlis007]

Paul I was watching your video and was stunned to see someone else has similarities to what I have. My arm jerks and sometimes my leg (s) if I feel really exhausted. My eye droops periodically as well. I still do not have a clear diagnosis. So far the doctors are considering Lupus. My blood work.....ANA test....was high, first it was 1:360, then 1:640, then 1:1280. That test alone does not indicate lupus it's just one of the criteas. The symptoms I have all fall under M.E. for sure.

[kaazoom]

I am coming more and more to the conclusion that because of the range of symptoms I have it is most likely i have either MS or ME, they are the only 2 diseases I am aware of that have this range of symptoms. The MRI had in 2007 apparently ruled out MS, although I couldn't keep still and the images are very blurred (I have a copy), so it is probably ME. But as this is a controversial disease, getting a diagnosis is unlikely. I am beginning to think I will never get a definitive one.

[neelubird]

Am I the only one who thinks the National should be blown up or burned down or something? We're not Drs here on youtube but we know more about Paul's illness than the collective knowledge of the bloody neurolunatics he's been sent to. Have you managed to get a copy of your medical records Paul? I don't blame you for wanting to take a break- those a***holes should be boycotted. I hope you find a breakthrough eventually and please keep us posted- you're among friends here:)

[kaazoom]

I haven't asked for my notes yet, but this is a possible next step. The fact that the first neuro I saw wrote "conversion disorder' on my notes is highly suspicious. It confims my fear that they have all followed that opinion rather than looking at me with a open mind. My GP did think I need advocacy and suggested getting in touch with PALS. I have done this and i'm waiting to hear back from them.

[laserlion77]

My neurologist thinks that I have conversion disorder they convinced my mom I have it. Now my mom won't take me to any other doctors except a psychiatrist/psychologist for my problems. Meanwhile my vision and tremors keep getting worse.

Good Luck, hopefully you find some answers. And thank you for the videos =).

[appleby69]

Hello Paul, I don't think what you have is psychological. When my mother was ill, the NH doctors did not have a clue what was really happening to her. She had loss of balance, cognitive problems, and had had epilepsy since her forties, complicating things still further. People thought she was somehow imagining it, until she died - and they only found out what it was by a post-mortem. I mention my Mum because I was always sure there was a serious underlying cause for her illness . James

[heatherwho]

Ptosis? Horner's Syndrome?

[kaazoom]

It's now become common for neurologists to diagnose conversion disorder instead of psychiatrists. Neurologists are not trained to assess people's emotional and psychological state.They don't have the time to do it properly. They should, in cases where there is any doubt at least work together as equals, and be able to challenge the views of each other. This doesn't happen at the National, there the neurologist diagnoses and the psychiatrist merely administers the treatment.

[CyborgNinja7]

Sorry I meant Guillain-Barre is an example of what a virus in the nervous system can do; I didn't mean that you had it. There are other examples of viruses in the nervous system but I thought that was a good example.