Neurologist..??

[baslow]

Seeing a neurologist is a waste of time.After seeing one are you any wiser of your condition. Only way to learn more about ataxia is to meet people who are in the same boat as yourself .I joind a ataxia club we meet once a month . Just talking to everyone there is educational. You certenly learn a lot and its so friendly.

[HarryB Administrator]

Dear baslow

Thank you for your post.

I must absolutely disagree with you that seeing a neurologist is a waste of time. On the contrary it is very important for those diagnosed with ataxia to see a neurologist, preferably every 6 months to a year. It is very frustrating for both doctor and patient that there is no treatment or cure yet for the ataxias, but it is important to see a neurologist for 2 reasons. The first is so that the progression of the ataxia can be monitored. Secondly, although there is no treatment yet for the ataxia per se, there are many symptoms people with ataxia develop that can be treated.

I do absolutely agree with you that no-one can truly understand what having ataxia is like other than those who have the disorder. I am delighted that you have found a group you are comfortable in. I think education and understanding ataxia is half the battle.

Best wishes

Harriet

[Vion in reply to HarryB]

Thanks for that was starting to wonder weather it was worth going as my first meeting with a neurologist is on 7th December after waiting 5 months so hope he has something good to tell me.

[Floramac]

I think it's frustrating when you are in a situation of which there appears to be a lack of medical information and knowledge but its definitely important to see a neurologist. For a start they can refer you to a neurologist who has a special interest in ataxia .

[poolboy]

I tend to agree to a certain extent. Once they have diagnosed you and told you what to expect, then there is not a lot else they can do.

[Iain_100]

I know it can be very frustrating, and there are times when even neurologists, who you expect to know all that there is to know, seem clueless.

But seeing them is definitely not a waste of time. And I say this as someone who has seen far too many head-scratching neurologists. It took them 17 months of testing to get to the point that they could diagnose ataxia - but still had no idea of the cause.

I agree with all that Harriet has written. There is another reason why you should waste your time seeing a neurologist:

Just like us who suffer from ataxia, they too are always learning. And the more we see them, the more they understand, and recognise, our symptoms. And are better placed to recognise these symptoms when future patients present themselves.

We are all learning. And although I've met 5 different neurologists, I've yet to meet one who didn't desperately want to know more.

[HarryB Administrator in reply to Iain_100]

Thank you Iain. Couldn't agree more.

Harriet

[february]

Dear Baslow, The neurologist I see is a researcher and expert in ataxia's. Yes, there is no cure but as Harriet said, there are some treatments that can help with certain symptoms. My neurologist writes me a perscription yearly for physical therapy addressing my progression. I see him every six months to be (also as Harriet stated) monitored, which gives me some peace of mind and helps me feel less "alone" with this. I also want to know about the latest research/clinical trials/developments/medications, etc., that may help ataxia. Only other people with ataxia can understand what it feels like and the challenges/frustration it brings. So glad you found a supportive, understanding group! My best to you...,;o)

[margaretm]

Agree with Harriet and Iain. My neurologist has clarified that the very diversity of Ataxia and its relative rareness are key factors to the current gaps in knowledge. Unless Ataxians and doctors work together, there is little prospect of improvement. My neurologist combines expertise and commitment with keen listening skills and a good sense of humour. She is keen to refer and to stress the role of physiotherapy. There is no quick fix from doctors and we should not expect it.

At the same time, it is really good to visit this site, share experiences and feel supported.

[jneilw51]

One thing that I have learned, by reading your posts on this site, is how many different medical histories and patterns of symptoms there seem to be for this particular disease. I can not think of any other disease that matches Ataxia in those ways. For that reason, I do not think that we can even begin to predict what a Neurologist might tell us about our particular form of Ataxia. On the chance that they could offer us information, or suggestions, which would help us to more positively deal with our conditions, I feel that we owe it to ourselves to see what a Neurologist might tell us. Some of us probably will be greatly encouraged, while others probably will not. But, if we truly want to know the truth about our health, that seems to be the chance that we must take.

In my case, my Cardiac Specialist referred me to a Neurologist about 12 years ago because I complained about increasing periods of fatigue. He felt that I may have Sleep Apnea. After a sleep study, the Neurologist found that I did have Sleep Apnea. When I told him about having periods of imbalance, he ran an MRI, Cat Scan, Spinal tap and DNA tests. He concluded that I had an alcohol-induced form of Ataxia. He said that, besides abstaining from alcohol, I could do nothing to slow the gradual worsening of my symptoms. A few months ago, I sought the opinion of another Neurologist. His prognosis was the same as that of my original Neurologist. Although these Neurologists were not able to offer advice for the treatment of my Ataxia, I did not regret having gone to see them. Even if I would have been pessimistic about what they would tell me, I feel that I owe myself the obligation of doing all that I can to try to keep my body functioning as well as I can. Although I value the information that a doctor can give me, I agree with most of you in that I get a lot more practical information from what I read on this site. Please keep-up the good work, fellow Ataxiaites!

[sylviagreenhalgh]

I saw my neurologist yesterday - I see him every 6 months or so. I was diagnosed by him after 4 years of seeing various people who did not think there was anything wrong with me and the usual conversations went like this

Can you feel the pin pricks in your legs ?

me - no

Doc- are you sure you cannot feel this ?

I finally saw this excellent neuro and he examined me , looked at brain scans etc. when I went with my daughter yesterday he showed us the scans and the damage done to the cerebellum and explained the condition to her. he is moving to another hospital but I will carry on seeing him as \I think continuity is important. I have been assessed for a motorised wheelchair and they have measured me and ordered one and the local council will put in ramps to the front and back door so life will get easier I hope. so yes I think it is important to see a neuro who will monitor you and explain your condition to family and other people who love you