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Ataxia Support

Idiopathic

Hi, reading through most of the blogs and discussions I discovered that most of you out there are dealing with the same issues I am dealing with. Many are offering their advice and support on what to do, a lot of which I have tried out by now.

My initial question: My ataxia is idiopathic, my neurologist has not found a cause (and has told me right away at our first meeting that there is a large chance for not finding it). Is it useful or worth it to continue searching? Or should I focus on mitigating the symptoms?

Lately I rather stress the latter - eating and sleeping well, avoiding stress at work and alsewhere as much as possible, socializing....

in general flexing every muscle I can find as often as possible without overdoing it.

Finally: I am from Germany. Anybody else out there?

Ask the doctor is it going to help to chase this information or are you wasting your money or medicares.

mine is idiopathic. I'm just focusing mitigating the symptoms. Sounds like you're doing all the right stuff!

Hi Max,

I too have idiopathic cerebellar ataxia. Since being diagnosed 5 years ago all tests have lead nowhere. And I can not hope for new findings of my cause.

I feel that you are doing the best you can to mitigate your symptoms by doing precisely what you have listed - avoid stress, good diet, restful sleep, socialising and exercise. I try to do all of these and even attend a weekly exercise session at a gym that specialises in disabilities. I want to increase this to twice per week as I feel the benefit to my underused muscles.

Maintaining a positive outlook and a sense of humour is also very important in coping with this illness.

If you wish to connect with other Living with Ataxia members in Germany you can click on the Members tab in the menu bar at the top of this page. This will bring up a list of Featured Members and All Members. Scroll down to the All Members area and click on 'Advanced Search'. Then in the 'Country' field choose Germany from the drop-down box and you will find seven other members. If you click on their entries you should be able to find out their location within Germany.

Best wishes and stay strong.

Mark

I think you are mitigating well. Keep up the good work.

Dear Max, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (idiopathic/unknown cause/symptoms 24/7). Like you, I and my neurologist have no idea why I have this. I'm curious as to "why", although their are no answers. So I just try to exercise for strength and balance, stretch my muscles each day and eat as healthy as possible, as all those things help me! Sounds like you're doing everything you can and that your focus is in the right place...,my best to you..., ;o)

my ataxia is hereditary, sca6,I live in france, you are the nearest I have found. In answer to your other question, keep searching!

mark - I tried the advanced search & it told me no members in Germany!!!!!!!!!!

..Short answer! The Doctors are idio-pathetic...

Max, there are two other members from Germany: http://www.livingwithataxia.org/profiles/members/?q=Germany

Fiona, you are at this time the only member from France. I think it would be terrific if one of you would set up a subgroup for our continental European members, as I know we have a couple of members from the Netherlands, too. Creating a subgroup is easy -- just click "Groups" at the top of the page and then click the "add" button. Pick a title, description, and then just stick with all the default options.

My Idiopathic symptoms began in the early 1980s, but it was a long tortuous battle to diagnosis, which didn’t come until 2011.

At the time I donated DNA and am still waiting to hear the outcome of testing.

Progression with SCA has been slow but it has proved to be degenerative. For me,
the best thing I can do is eliminate stress as much as possible. Built up tension
causes agitation.

At the time of diagnosis I was told that my condition was mild. But, I’ve experienced
a lot of symptoms associated with the condition.

My main aim is to focus on day to day activities with as much humour as possible :slight_smile: xB

Fiona and Madere - in the member search results I get seven persons in Germany

http://www.livingwithataxia.org/profiles/members/search?name=&country=DE&location=&q23=&q25=&q26=&q38=&q39=

and six in France

http://www.livingwithataxia.org/profiles/members/search?name=&country=FR&location=&q23=&q25=&q26=&q38=&q39=

LOL, Mark, isn't this peculiar. I will have IT take a look at the search process to see what's up. In any case, plenty of people for a continental Europe group, so I do hope one of you will start one. It's a great way to share recommended doctors and so on.

no, but we heard of a very good medicine from European acetyl dl luceine. docs name is Dr. Strupp. think its Munich??? google Dr. Strupp, ataxia. good luck

lorraine

Hello Max

Mine is also idiopathic and my neuro also told me right from the beginning (diagnozed in 2004) not to get my hopes up high on a cure.That science/research of the cerebellum still had a vey long way to go and even more when idiopathic.So I am not searching for 'cure'. Waste of time and frustration, which we can do without. Hoping for something that's not going to happen, is kinda cruel on yourself. I also flex the muscles to keep them strong: your legs still have to carry you, right. I am also looking for people here in Holland, but not much activity out here. So I am happy to meet a 'neighbour' :) Grüsse aus Holland, Elle. Übrigens, wo wohnen Sie in Deutschland?

Hi there,

Just saw this now. I was told in 2010 that my CA was of an unknown cause, and the neurologist basically thru me out. He said, "I have a drawer full of people like you..". But in 2011, I was told autoimmunity was at the root of the problem because I have very high levels of two antibodies: AB Nuclear and GAD. Since then I have been taking IVIg treatments (first I had plasmapheris) but none of this has helped drastically. Although, this treatment has been approved by two independent neuros. It did get rid of my hives, I was getting profoundly long outbreaks every few months. My dr. keeps saying, "it could have been worse" but I am thinking now that maybe the IVIg has caused the high antibody count to begin with. Maybe I am wrong. I am not a dr. As you see there is no end to the amount of searching that can b done. Having said that,I think it is better to know as much as you can. I am writing from Jerusalem, Israel. I wish you good luck.

Neta, I have a history of autoimmune issues. I share your blood serum detection issues. Markers for SLE I have.

My neurologist also checked my spinal fluid and the finding coupled with SLE markers enough to convince the insurance company and Medicare to allow Plasmaphersis and IVIg. after many treatments of IVIg and a very short lived small improvement I stopped taking.

This one's for Neta:

He said, "I have a drawer full of people like you..". Well THAT neuro needs a GOOD thrashing!!!

Madere good idea to set up a european group, better if somebody else does it as I cannot make this site work!

neta, that neuro is a right ****