Referral To a Movement Disorder specialist At last!

Just a quick update on how things are going and about getting my GP to refer me to a neuro who specialises in movement disorders.

Category:

People & Blogs

Tags:

• dystonia
• neurological
• problems
• movement
• disorder
• me/cfs
• cfs

[gregcrowhurst]

I would think that you could appeal re the blue badge - you clearly need one. so very pleased that you are finally going to get your movements loooked at - they surely can't deny they are there??!!

[kaazoom]

I have contacted social services and I am entitled to a Blue Badge because I get DLA mobility at the higher rate, this means that entitlement is automatic. The problem was that the doctor didn't pass this information on to them even though he knew about it, and made it sound as if my condition is intermittent. So at least that is sorted. I am just hoping that it comes through soon as I am going to Wales with my wife for a holiday soon and it will help with being able to get around.

[taniaaust1]

It makes me so angry and sad that its taken this long to get refered to doctors you need to see. I feel for you so much as doctors were always trivalizing my illness too, until it got too complex for them. (Im up to having 81 different symptoms and other illnesses happening with it, just got out of a being in hopsital for a week). Now they either trivalise it (depending on the individual doctor, many still dont belive in CFS/ME) or just refer me off to another as its "too complex"

[kaazoom]

Hi Tania, It sounds like you are havign a pretty bad time too. That is the problem with mE, there are so many different symptoms! This is what usually throws most doctors. I was told that my symptoms are too complexed to be referred to The national ME Centre here in the UK, they only see people with simple fatigue syndromes!

[shanti1001]

ur wonderful and i can see how this in some many ways has brought such understanding and wisdom :)

shanti

[shanti1001]

hi my name is shanti i have essential tremors ive had it my whole life it started in my hands and when i was about 24 it moved up into my head i finaly got disibilty it took so long because i was not being diognosed not intil just last year ive been misunderstude my whole life now that im finding others and getting to understand whats happening to my my whole life finaly getting to understand brought me to such tears my heart goes out to u my friend in deep understanding :)

shanti

[paula2048]

Paul, I really hope you get this movement disorder sorted - having followed your videos I can see that it is getting worse and I think you are quite remarkable to hold on to your faith. All the best, Paula

[sanibelrunner]

Good Lck to you Paul. I have some Neurological Disorder that in some ways resembles yours. I live in the U.S. and am a female in my 40s. They don't know what to do with me and just say I have a rare condition and blame it on Psychological issues. It's so frustrating. I wish everyone out there suffering from unknown diseases well and you Paul, I wish you to find help and a Good Doctor who doesn't trivialize your symptoms

[Alexsk1]

Glad to hear you are seeing a specialist. Hope they can help.

[ivortick]

Paul, I'm glad you've got fixed up with a movement specialist, but furious about the blue badge - I presume you can re-apply? Thanks also for sharing how God keeps you going. In my prayers, Nigel

[deadgirldreaming]

I am furious on your behalf over the dla and blue badge thing - wish I could be more angry for my own situation...

I really hope that the specialist will be able to find something to help alleviate your symptoms...

Good luck!

xxx