I can't find a doctor to help me


I could use some advice on something that’s been going on lately.

A few years ago, I started getting sick. My legs were weak and I was falling all the time. I couldn’t swallow without pushing up food and a whole host of other things. My friend paid for me to go to a fancy neurologist. This turned out to be a big mistake. He spent a half hour on the phone talking with someone about a party they were going to later that evening. Then he looked me over for less than five minutes and told me I had a clean MRI and so I was perfectly fine. He said the whole thing was in my head and that now that I knew, I was cured.

This messed with me for a while. I actually tried to walk without my cane and fell several times. I finally saw another neurologist who was wonderful. He did a full workup, checked me out talked with me, and at the end told me I had cerebellar ataxia. He gave me a good plan with PT, OT and everything else I needed to learn to live with my disease.

The problem is this letter from the first neurologist keeps coming back to haunt me. I applied for disabilities and the board is convinced that I’m faking it after I accidentally included his letter in my file. They keep giving me problems about it and are insisting that I get another neurologist to confirm.

The problem is that this makes it impossible for me to get a neurologist to talk to me. The first one I saw was at the same hospital as the guy. He saw the report when he looked me up and that shut down the appointment. He just read what the other guy wrote and gave me the same lecture. The second guy I saw was at a different place. But he saw a note in my disability forms and once again wrote me off without even looking at me.
So now I don’t know what to do. On and immediate level, I need to find someone to help me with my disability paperwork. I am getting stressed out and terrified of going to the next meeting.

But more importantly, this is tearing apart my life. Since this meeting I have been close to a total breakdown. Once the idea that this could be all in my head got itself stuck in my head it won’t leave. I keep questioning myself all the time. I spent hours reading everything I could on conversion disorders to see if it was true and this whole time maybe it really was all in my head. I read the DSM over and over again. I can clearly see that I don’t have this. I don’t fit the criteria listed. My wife, who is a psychologist even told me I don’t fit for this. I have seen several mental health professionals l since I first got sick and none of them have even mentioned this. I spoke with a psychiatrist who did a full evaluation and told me that I most certainly do not have a disorder and that I don’t fit any of the symptoms.

But even so this is taking over my entire life. I told you before how my anxiety and depression had gotten bad the past few weeks, and now everything has hit a breaking point. I am either so depressed I don’t want to get out of bed or so anxious I can’t function. I honestly don’t know how much longer I can keep holding on with this. I have actually tried to walk normally after repeating to myself that it was all in my head. I have fallen several times.

I can’t even talk to anyone about it. I worry that once I put that out there it will always be the back of people’s minds. It’s a bell you can’t unring. But meanwhile I don’t know what to do.

I live in the U.S., but I think I can safely say that you might have to ask a favor of that wonderful neurologist that gave you your diagnosis. Just explain to him your situation and ask him to refer you to one or more neurologistside so that he can vouch for you that you aren’t faking and you have a serious diagnosis.

That first neurologist was such a jerk. I’m so sorry you are having to deal with all this besides having a Ataxia. Good luck and don’t give up!


I agree with Sharon, it’s obviously a great pity you didn’t see the other Neurologist first, he sounds much more experienced.
It doesn’t always follow that because somebody has a ‘fancy practice’ that they are an expert on a condition.
Cerebellar Ataxia is often difficult to diagnose, a ‘clean’ MRI doesn’t necessarily exclude the condition.
Ataxia Centers are often the best places to see a Neurologist, or Movement Disorder Clincs.
If you need information about these, or anything ataxia related, you may find help with advocacy too. See www.ataxia.org

I have seen so many bad neurologists here in US it makes me sick. If you hVe SCA you absolutely need to go to a top researcher–dr gomez at U. Of Chicago or Dr Perlman at UCLA or Dr Brent Fogel UCLA. i had clean MRI’s for 10 yrs and now only have questionable MRI’s. Dr Gomez had no trouble diagnosing me and at UCLA you could get a DNA that would clear up any question. New genetics tests can be affordable ammd test far more than in previous years. Research your area for SCA researchers or experts or come to US. You aren’t crazy just a victim of a bad medical system.

you have to get that bad dr. off your record.go to another dr. and explain to him or her about the first dr. and what its done to your disability case. he might be able to fix that part.

Hello Goodilan,
It is difficult to help you since you are in another country but
The National Ataxia Foundation lists this doctor on their website. Are you close enough to her to go see her.
Here are her information.

Tanya Gurevich, M.D.
Tel-Aviv Medical Center
6 Weizmann St.
Tel-Aviv, Israel 64239
Phone: +972-3-6974912
Fax: +972-3-6974911
Email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■

My best wishes to you and good luck,

I am having a problem getting treated. The last problem was my doctor told me to give up cannabis for a month and then he can talk to me about botox for neck spasms that bother me now especially at night. HMO wont treat it seems unless it is in the emergency room or a provable need. Was refused L- dopa trial because I was not a parkinsons patient. Was denied further tests on thyroid lab tests. You do not want to tell a doctor you take any cannabis products, have ever smoked , or taken a test for a rare disease. Jerry