New patient from the UK: CFS specialist or neurologist?

[gregh286]

hi @paulie
one of the first times i was at GP i had horrific all over muscle twitching.
GP couldnt believe it....thought it was ALS or something.
i was quite relieved as GP could see a physical symptom in me....he couldnt.play the old "its all in your head card."
i did searching on here and net and some suggested it was low cell potassium.
i eat loads of bananas and it subsided.....when it came back i repeated eating them
it may have been hugely coincedental but its a easy thing to try.
taking magnesium supplements may help also.

 

[eafw]

Not in my experience.
Cornwall is surprisingly good - they can't do anything to make you any better but they don't believe it's psychological or do anything to make you any worse. I refused the chance to see them for a few years because I heard scare stories about GET. I gave in in the end because my family wanted me to get a 'definite diagnosis' and the clinic was really helpful with drugs, pacing, finding my baseline, disability aids and helping me accept what was happening to me. I'm grateful to them.I got the impression they paid lip service to the NICE guidelines and did a little extra where they could.

Yes, I know that on an individual basis there are some people who get lucky and are helped by the CFS services that exist.

BUT the problem is that the overall view within the NHS is still "mental health", and just because there are a few practitioners who don't always stick to NICE on a one to one basis - until they speak out more publically about this, about the failure of CBT and GET, and until the NHS completely pulls the care of ME away from mental health units and psychiatrists and offers us something better than "lifestyle management" (currently best we can expect) then we will still, as a patient group as a whole, suffer for that.

 

[Hip]

My doc gave me two choices of neurologist or clinical psychologist/psychiatrist. I was pretty confused as to why she was recommending the latter. I opted for neurologist but for some reason she ignored that and went for the clinical psychologist/CBT route.

I was thinking the neurologist would be the sensible path but then I think maybe they would just confirm my leg twitching is not related to something more serious like MS or ALS and that it is (as I suspect) 'only' fasciculation syndrome (and so it wouldn't really get me anywhere).

I also thought a neurologist would be helpful when I first developed ME/CFS from a viral infection, given that ME is classified as a neurological disease; but like you, the I found the only thing the NHS neurologist told me was that I did not have multiple sclerosis. Neurologists do not know much about ME/CFS.

Similarly, most infectious disease specialists will not know much about ME/CFS. And most psychologists will just tell tell you that your symptoms are "all in the mind", so they are of no use either.


You are best off seeing an ME/CFS specialist. There is very little choice in the UK, but you can go to see ME/CFS specialist Dr Kenny De Meirleir in Brussels, who is internationally renowned. A consultation with him is not expensive, but the various tests he orders will typically come to around €2,000.