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Ataxia Support

Long time no check in

Hi Everyone , I have not been on this site in over 2 1/2 years , things look different .
Thought I would give an update and ask a few questions .

Update : not much here , my symptoms have not changed any in the past few years . I still cant walk without a walker and my speech is still slurred , all my other symptoms come and go just like they have for years . I was treating with an LLMD , but he has now been pushed out of practice by the medical board and insurance companies . I was making some substantial progress , but … , now I just maintain where I was before I started .

Questions : What do you do when all your doctors throw in the towel and discontinue seeing you ?
Is there some legal recourse to force a doctor to at least see you once in awhile ?

I have been seen at all the big northeast hospitals and clinics , and no one has a clue what my problem is , I dont have brain spots or lesions , I have tested negative for every disease out there , Tested for toxins , tested for cancer , Tested for Aids , etc , I have had spinal tap’s , been on all sorts of meds , MRIs , Cat scans , Xrays , and been plugged into every machine they could find to bill me for . And I am fit as a fiddle , yet I wobble , have little balance , uncoordinated movements , tons of pain , my speech is slurred , etc .

Anyone else have similar symptoms please share …

hope you all are doing great …

Hey, Searcher

Great to have you back! Yes, this place does look a bit different now: you missed the whole drama with our previous host not maintaining the platform, and the nail-biting weeks when we scrambled to get ourselves on the new platform before the whole community imploded and we lost everything. Come to think of it, that was a good time not to be around, LOL.

The new platform works somewhat differently than the old, but the same members that were here before, still are. Your friends list, however, didn’t survive the winter. Sorry.

Again, welcome back, and I hope your post will bring some of your old buddies out of the virtual woodwork.

Seenie from Moderator Support

Searcher, Many practitioners have not heard of certain ataxias. The trick is to become associated with someone who specializes in conditions such as ataxia, or a movement disorders clinic. Remember, ataxia is a condition not a disease, so many doctors no how to treat disease and do not have good advice for a condition. It also may be that your doctor’s have “thrown in the towel” because they do not know the condition well enough or at all. And rather than provide you with inadequate treatments it is easier to step away.
You may find this site will give you better satisfaction and advise, we are here to help.
Most ataxias and conditions like your’s are hard to detect, and usually there are no cures. Only some relief for your symptoms. So in conclusion, you have come to the right site for advice and support. You may find that members here provide better help for your condition anyway.

Well the movement disorder clinic at Yale university did not know how to address this either . I got zero answers from them . They have never seen this type of disorder before and discharged me without any recommendations.

Pity… They should be at least following and trying to treat your symptoms. One never knows when something could be learned. Stay vigilant and strong.

Sorry to hear you have not been diagnosed with ataxia. You need to find an Ataxia specialist by you. Connect or go to the NAF website and they do have a list of doctors that specialize in Ataxia. It took 3 years for my diagnosis. Where in the northeast are you? If you can travel there is a specialist in California. Mine is in Chicago and I travel to see him from Arizona. I don’t want to give him up. Let me know if you need names etc.

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Yes I run a local support group and several members have all or some of your symptoms. I too have no definitive diagnosis but have been given a ‘presumed’ diagnosis of idiopathic cerebellar ataxia .
I am of the belief that in the UK you are entitled to see a neurologist every 2 years but you could confirm that with Ataxia UK. I will be 75 years old in November and have decided not to have any more tests. I appreciate that all test results whether positive or negative, help with meaningful statistics but I think I have done my bit.

I agree I am done paying to be a research lab rat . I really would like some answers from them . But here in the states we have to keep insurance companies in pay dirt first and fore most .

And many clinics ask that we participate in trials (which I do not). A non-invasive site to participate in statistics is:
https://www.rarediseasesnetwork.org/
I agree, there are no broke insurance companies! Provincial Health Care totally covered my genetics testing. However, I know it cost taxpayers 10’s of thousands of dollars. Some tests even had to be shipped to the states, adding costs no doubt. Only to find nothing, and even if they did find something, there likely wouldn’t be much hope. I often wonder what my neurologist or dr. bills the tax payer/visit?

Another helpful site to check out is https://rarediseases.info.nih.gov.

Yes this is a more comprehensive site. As people/patients can see there are thousands of possible diagnosis on this site. It really gives a sense of the complexities professionals must face when making their diagnosis. This site might be a first stop for individuals to explore, and many conditions are followed by a link to the rare diseases registry website, if you wish to contribute your situation with the survey.

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This is nuts. I saw my brother walk. He was not faking it. I heard him talk. There was something very wrong. I feel myself wobble and be very slow. My aging is defined by the unknown. I never expected this. I feel bad and confused and defensive.

Neurological conditions are notoriously difficult to diagnose, many symptoms can ‘overlap’, leading to delay and inevitably to frustration and stress😑 And inevitably the condition progresses and becomes increasingly more challenging.

The general recommendation is that an appointment be made with an Ataxia Specialist, if at all possible.
Most of us are aware that not all Neurologists have this specific expertise.

As well as being genetic, there are several other acknowledged causes of ataxia. Reliable, easy to read information is available on www.ataxia.org

My own symptoms started well over 20yrs ago. I’ve been
misdiagnosed (which was horrendous), had a tentative link given, and now my Neurologist is considering a different ataxia.
Anger, Confusion, frustration, grief and loss they all take their toll. And, quite often these feelings can cause symptoms to flare up, appear more challenging😏

There’s no easy answer. Being proactive, understanding the condition in general has helped me come to terms with my
’new normal’:smirk: xB

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hi Hutchy-I sent you a message. thank you for your input-the difference i saw was that the site I posted listed Cerebellar Ataxia from Dilantin as a rare disease. Which is helpful to know in terms of SSD application. Thanks for your input.