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New Neurologist ( Movement Dissorder Specialist)
lepman posted:
I don't know what to say now that I was sent to this Doctor, She was more like a general neurologist and why I was sent to her I'll never know because It seems like I'm back to square one with this whole thing now....after going through all of the examining and going through my recods she tells me only a couple of my symptoms are movement related the rest fall into spinal or a brain stem dissorder. She then tells me she wants to have a blood test for Episodic Ataxia type 4 done,but it has to be preapproved by my insurance before it can be done.

From what I have learned about Ataxia it's a way to explain the symptoms,but there is always an underlying cause,like lupus or ms or well as a host of other problems. and there are over 40 differant types of Ataxia....I do understand that this is or maybe part of all the ruleing out process but if there is an underlying cause for it all, wouldn't it be better to identify the cause rather than confirm the symptoms with an Ataxia DX. the 40 types just seem to identify the length and severity of the symptoms, and some differentiations of symptoms. But they express an underlying cause.

She told me there was no need to have any more follow ups with her and that she will send the nesscesary paper work to my insurance and that my local neurologist can prform the blood work for this test. She did how ever discover that I now have an unusualy high heart rate but my blood pressure is still very good. and prescribed a new medication to help slow my heart rate down. some kind of beata blocker. My BP was 128/ 70 and my heart rate was117 bpm.lying down and when I stood up it went up to 121 bpm. but the blood pressure stayed almost the same 129/ 76...Thats a new thing that just started happening....I told her that I have noticed in the last couple of weeks that I have noticed my heart feels like it's raceing, beating out of my chest at times when I sit down is when I notice it.

She just dosent know whats causing all my symptoms and sent me back to my local Neurologist and my local neurologist has referred my to another Neurologist and I see the new one in a couple of more weeks.....But no word yet about the blood test for Ataxia.... I guess what I realy need to find out is Ataxia a stand alone dissorder or is it truley a description for an underlying dissorder? the Nurologist that wants me to get the test wasn't too helpful about this subject.
hackwriter responded:

What great questions you have asked! I was so intrigued that I did a little research on your question: Can ataxia be a stand-alone disease in itself? I found something called Spinocerebellar ataxia that is a disease in its own right and is often misdiagnosed as MS according to this article:

It is a genetic disorder rather than an autoimmune disease.

So perhaps it isn't a waste of time to identify the kind of ataxia you have, as the numerous types of ataxia might be treated very differently.

To see various types of ataxia, I typed "Is ataxia a disorder in itself?" into my search bar and found many links to read. Spinocerebellar ataxia was just one; others are not diseases in themselves but are symptoms with an underlying cause.

Thanks for sharing your info, I've learned something new today.

I hope you'll continue to get tested; it sounds like your neuro is trying to get to the bottom of this problem. Keep asking questions and doing internet research. And do keep us informed about your doctor visits. I'm sure you are on your way to learning the answers.


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