Finding the best specialist for dystonia - Dystonia Society

Dystonia Society
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Finding the best specialist for dystonia

Rkai
Rkai

I have the chance to find a new neurologist/specialist for a second opinion on my ‘Cervical Dystonia’ . Any advice out there as to the best way to go about such research? The years are going by and as my symptoms don’t seem to ‘fit the tick box system’ it’s been suggested I try to find a specialist who has more knowledge and experience of CD.

Thank you for any thoughts/ideas you have.

19 Replies
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Hidden
Hidden

Look for a movement disorder specialist...U can also find doctors on Dystonia Research Foundation website.Hope this helps.Hope u have a fab day ! :)

Rkai
Rkai in reply to Hidden

Thank you for replying Monkeysmiles. I guess you must be in the States. I only wish we had something similar here.

Hidden
Hidden in reply to Rkai

I do have Dystonia in my neck real bad ..Similiar..we r both on this site trying to help ourselves n what's we r going through.

crazycatlady55
crazycatlady55 in reply to Rkai

We do. It depends where you live. There has been more research into Dystonia in the UK than anywhere else in the world. Newcastle upon Tyne medical school is one of the best. There is an excellent Movement Disorder Clinic attached to it. In suffer from the rarest form of genetic Dystonia and I have always had the best of care.

Rkai
Rkai in reply to crazycatlady55

Thanks for the info. I hadn’t realised we had the best research here in UK. I had the impression that Dystonia Society, who have very limited research investment, were the only source. I will have a look at the Newcastle Med School info. Sadly I live a long way away in Devon. Brilliant that you are getting such good care.

crazycatlady55
crazycatlady55 in reply to Rkai

Hi. The Dystonia Society did not exist when I was diagnosed with Dystonia. It was a Organization that was get up to provide support and information for Dystonia suffers. Just like the the MS and Parkinson’s Societies. If you live in Devon you might want to check out the Teaching Hospitals in London. There are lots of very good Neurologist in this country. Good luck.

Rkai
Rkai in reply to crazycatlady55

Thank you for your message. I used to be a member of Dystonia Society but was very disappointed and when they gave up their helpline. Also I was asked to write a piece for their magazine on my experience with cervical dystonia. I sent it in was then told my case was too unusual and thus not of interest.

crazycatlady55
crazycatlady55 in reply to Rkai

Sorry you have not had good experiences with the Dystonia Society. To be honest I don’t really bother with it. I have had Dystonia since I was five and I am 63 now. I suffer with the rarest form of genetic Dystonia. There was no support when I was diagnosed apart from my neurologist. Things are so much better. It makes me sad when I see all of the negative feedback on this site. There has been huge advances in treatment s in the last forty years. There was no treatment at all available until the late 70s early 80s. I was so happy to be part of the clinical trials for many of the drugs that are used today.

I went private and used the BUPA website to find a neurologist that specialists in movement\muscle disorders that has a practice near to where I live.

finder.bupa.co.uk/

Hope it helps!

Rkai
Rkai in reply to rtn3421

Thank you for your message. I am interested as we do have insurance but they consider dystonia a chronic condition so won't fund.....did you come across that with Bupa?

rtn3421
rtn3421 in reply to Rkai

I had funding for a couple of visits and an MRI scan, however BUPA would only fund one botoxin treatment. After I found that out I switched back to the NHS, but going private was good enough to get diagnosed and put on the correct course of treatment which the NHS doctor now follows.

Rkai
Rkai in reply to rtn3421

Really helpful reply.....thank you v much. I just hope I can describe the claim in such a way that they don't refuse....my GP thinks I should seek a second opinion with a neurologist who knows more about muscle/movement disorders. Anyway I am very grateful to you.

Good afternoon. I, too, was considering a second opinion. I don't have any tremors, and I am beginning to think of dystonia as a symptom instead of a diagnosis. Your thoughts?

My approach right now is a clinical trial. At UC, you must be seen by a neurologist from the movement disorders division to participate in an observational study I was considering. This is not a medication trial. They just want to observe my evaluation process so to develop better universal diagnostic tools for isolated dystonias. This study would observe me for a few years. awesome news. A win/win solution. What do you think?

Rkai
Rkai in reply to AllHis

Hello

I am like you with tremors only showing when muscles are physically relaxed....interesting idea of symptom rather than diagnosis. I have only just now come across the meaning of the word Dystonia....dys meaning ‘wrong’ and ‘tonus’ meaning ‘tension’. You probably already knew that but in all the reading,research, member of Dystonia Society, all the consultations, etc, no-one has ever referred to that simple explanation.

On the clinical trial what a wonderful opportunity..... I am assuming you are not too far away from London.....how did you find out about it? Sadly I live 200 miles away so not very practical for me! But I am still going to try and find a new expert to get a second opinion.

I am very glad to hear your news..definitely win win...

AllHis
AllHis in reply to Rkai

Oh, my. "UC" is University of Cincinnati Hospital. I sent this out really quickly, not considering "UC" may have multiple meanings. Sorry about that.

HealthUnlocked has a program that walked me through the many myths of clinical trials. It's been interesting to say the least.

I began my journey in Fatty Liver Foundation in HealthUnlocked. A wonderful group. I've been given a lot of diet information and encouragement to participate in trials.

My personal thought about my situation is maybe dystonia is part of a drug reaction involving a compromised liver. It's my right side of my neck and right shoulder and my left jaw that are really tight. sometimes I feel like my teeth may be cracked... Some of my teeth and Jaw just plain hurt. It even hurts to yawn.s a challenge just to find the right place of the pillow. I sure hope others help you with your search. I'm looking at the neurologist specializing in movement disorders. My current neurologist specializes in headaches.

Grvarley
Grvarley in reply to AllHis

I so believe medication can cause it. My husband has severe cervical dystonia which developed after requip. I am trying to find more people so I can get the drug company to put it on its side affects Please read my post.

Hi

Not sure where you live. Walton centre in Liverpool specialises in neuro conditions. Also dystonia specialists . Try Drs Moore and Steiger. I think the latter can be seen at liverpool Spire hospital.

Otherwise look on line attheBritiah Neurotoxin network who have consultants around the country an clinic in London.( Dr Marie-Helene Marion ). Hope you find somebody

Tim

Rkai
Rkai in reply to timgann

Dear Tim

Thanks so much for replying with helpful information. I love a long way from Liverpool but will certainly look up the Neurotoxin Network. I have heard of Dr Marie-Helene Marion before. I am grateful to you.

I would really like to get more information on it also.

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