Ataxia Test


My neurologist suspects I have spinocerebellar ataxia, and ordered a full ataxia test. I was mailed the bill for my ataxia test; it's over $20,000. I'll only have to pay $600 because of my income. My suspicion, however, is that the neurologist ordered an expensive test to make money. I did some research and learned about an uncle who has Weylander Myopathy. The symptoms are similar. I've already taken the ataxia test, but they're withholding the results until I mail back financial forms and agree to pay $600. Should I do it hold off and see if the doctor will help me figure out if I have Weylander Myopathy?

What I mean is: do doctors get money from expensive blood test? I don't trust him. I had a panic attack in his office and he didn't seem to care. Am I being paranoid? Also, are university hospitals more reliable than clinics? I want a second opinion and I plan to go to UW because I've been warned about clinics.



Get a second opinion ASAP..I'm sorry you're paranoid..Early on-set symptoms are as scary as all hell and you can be easily persuaded to take all sorts of tests..$20,000 seems to me to be a load of 'hog-wash' and I'm cranky to hear that figure being quoted to you..Are your hands OK ?? Welanders Myopathy starts usually with the fingers !!..Anyway,I'm no Doctor,so please get that 2nd opinion..Good-luck :-)<

The ataxia test are very expensive. The doctors don’t get amy of the money for the test.May I ask who the testing was done thru.I have machado Joseph disease ataxia 3. .I had the teting done and it was 20,000 bit paid 300.00 cause of my income.

What type of testing costs 20 grand. I live in Canada and I have MJD as well and don't see any bills. I had the blood test and an MRI but I'm sure it won't come to that kind of money.

Since you have already had the test go ahead and get the results it's better to know . Yes a university is better only for the simple fact their always teaching and learning new things. What are the test for the welander myopathy? Talk to the Dr. about that after you get the ataxia results.

What dicks. I find university hospitals a lot kinder. The doctors don’t tend to make a lot of money and are working there because they are honestly interested in the disease and want to help. But yeah I’d find a way to scrape up that 600 so you can know.

Don’t you sometimes wish you could give someone a devestating illness just for a day so they’d know what it’s like? I do.

Dear Friend:

The term ataxia itself means an abnormal gait which most of the time seems to be similar to that of an alcoholic. When your Dr indicated Spinocerebellar (SC) it means that your problem is most probably being caused by problems or lesions in these areas of the nervous system.

I am personally a parent of a child with this form of ataxia. As we have never had any cases of SC Ataxia in my country we were sent to UK 3 times for the necessary tests. Being a health care professional myself I demanded to be informed on each and every test my daughter was going to have. When I was told about the test you are mentioning I was skeptic, and did my research very well with regards. What I found out is that it was the correct price not only in UK, but also in the United States of America, and other EU Ataxia centers. I also found out that we were very lucky to have this test done as most of the Medical practitioners never prescribe such testing quite obviously due to its expense.

I also found out that those officially diagnosed through laboratory testing are being listed in a rare disease register which is being kept in the United States, in case new medical breakthroughs are identified. This alone is already good enough reason to be tested officially.

I can understand fully your concern but the only thing I think about your doctor is that he could have explained to you better your position and the reasoning behind his decisions. I would like to point out that I would never presume to judge in any way your Medical officer or the care he is giving you, but do your research well before deciding to look for second opinions. These can be very expensive and you would still be possibly receiving the same treatment. I was going to look for second opinion myself for my daughter, but when I found a friend doctor who explained to me my daughter's situation I found out that my insecurities were only based on my lack of knowledge on the subject matter. I don't blame myself or anybody for this as I have already expressed that these cases are considered as very rare. In fact I was told that even in this state of the art neurology center were my daughter was sent, it was their first case of SC Ataxia.

What I suggest is that you find a health care professional (friend) you can trust and discuss your case properly before you incur other expenses. Use your financial resources in best way possible, maybe you might find that spending money on occupational therapy or devices that can help you in your daily activities of living is a much wiser idea. I feel that I can understand this situation quite well, as even though all medical expenses and tests (including traveling expenses) are being paid by my national health care system, I still had to pay a lot of money to convert my residence for our daughter's progressive needs.

I would also suggest you research the condition your uncle has from reputable healthcare websites. You might find that there might be some particular signs and symptom or genetic situations that might not relate to you. For example it might be a condition that affects only males or only at a certain age or life situation: I know nothing about the condition you mentioned, but what fits Patient A might not necessarily fit Patient B even if they are related. This might be the reason why your Doctor disregarded this when you told him about it.

If you would like to know a basic knowledge about Ataxia, The University of Minnesota Ataxia center published a book free of charge on their website. It covers all forms of ataxia one by one, and gives information about signs, symptoms and available tests for each and every one respectively.

I hope I was of help for you and for those reading these forums, if you need further help feel free to contact me even by email if you like.



The same exact thing happened to me. My neurologist diagnosed me with cerebellar ataxia. He said I either have SpinoCerellar Ataxia or Multiple Systems Atrophy. He said that a genetic test would confirm one or the other. But the test was going to cost me $20.000. I opted not to take it since there's no cure for either anyway. Then I came across a much cheaper genetic test (about $100), it's called I took the simple saliva test. I just need to call this new doctor and go over my test. Looking back, I think I was getting hosed by my first neurologist for 20K. Good luck to you! I hope you just have a condition that can be cured-I don't.

Corey Chang

Hi Corey

Did they tell you that the 23and me test would give you a diagnosis. I would love to here the results from that test.

Can you let the group know the results from the test.

It sounds like you had genetic testing. I think this is standard. It is not an Ataxia test but looks is for a reason for the ataxia My doctor ordered this for me but Anthem insurance refused to pay so it was never done.


No, I'll no nothing until I go over with it with my doctor. Hi Corey I was told by 23and me they didnt have those kind of results anymore when did u have your test done?

Hold onto your money and get a 2nd opinion in a University hospital. At least there's some decent research and scientists of the cerebellum out there. Clinics are for making profit in the 1st place. So think twice, make a wise decision:)

1st, the go to lab is Athena in Maryland, and yes, it's expensive. It is ridiculous, and no, Docs don't get a kickback. The problem is that you can have a full panel done, and still come back neegative on all of them. This is because they can only test for those they have patents's all a money and politics game. Corey, I just looked at think in no way, shape, or form, is this anything even remotely resembling what is needed to test for a genetic mutation. I hate to say, but I think you just threw a hundred bucks away.And yes, a clinic is to make money. A university is much better, but MUST have aresearch facility, like UCLA, U of Florida, U of Chicago, U of Minn.

Hello, Noel Formosa,
I agree with almost everything you say, but I respectfully disagree with your definition of ataxia. Ataxia is not just an abnormal gait. Ataxia comes from the Greek “A” which means “without” and “taxis” which means “order” .
So, in general, it means movements “without order”, whether we refer to legs (abnormal gait) or arms( intention tremors for instance) and even the trunk in the case of trunk ataxia. It refers to a lack of coordination, due to damage to the cerebellum as you said…
The medical people refer to ataxia as a group of symptoms some of which I described above, not jus the abnormal gait.

As you mention the University of Minnesota has an excellent website which I am posting now. you for mentioning it.
My very best wishes for your little girl. Nothing worst than when something happens to your child!

Are you talking about the DNA test? I have to take my son Monday for the bloodwork for the DNA test. He has Episodic Ataxia and the DNA test is suppose to help us narrow to what may be causing it as he just turned two years old and can’t tell us what’s going on. The neurologist told us that the test would be $2,000 the most if our insurance doesn’t cover it. But our insurance should cover it so then he said it would be anywhere from Zero to $500. I know that they are sending the blood to a lab in Boston and it can take 4-5 months to receive the results. Now I’m really nervous seeing $20,000!!

I'm not talking about the genetics test. I think my insurance paid for that, unless a genetic test is part of the full ataxia test. I think they're separate tests. The test that costs $20,000 is the full ataxia test. I hope they can help your son.

That is surprising and confusing. My neuro. said that my insurance wouldn't cover it. I still insisted and agreed to pay full costs. Athena gave me a price of $1,000. The tests were done, and I was quite willing to pay. However, I never received either a bill or a receipt showing that payment had been done. I would question Athena again. I found them very cooperative. These differences in fees are terribly irritating and so disappointing. Luck with you.----Silky

John "JC" Colyer said:

In 2010, I had full Ataxia screening blood test from Aethena Labs ordered by neurologist, nurse told me she received approval from my insurance company, not on Medicare then, it came back negative. 4 months later I received a bill for $ 10,000, I was in shock , both nurse & insurance company hung me out to dry. I settled and payed $2,500.