arizona girl Posted August 4, 2009 Report Share Posted August 4, 2009 Hi all, I know a lot of us have been frustrated trying to find doctor's in arizona who even understand what dysautonomia is. I was told be my first neurologist that there wasn't anybody here. After my positive TTT, he had me come in for an emg (large fiber), when that was normal and I asked about other testing, he didn't think there was anything, and then I said what about small fiber neuropathy. He then said my conditions was beyond his specialty, and he didn't do those, but would refer me to someone who does.So I ended up in Dr. Levine's office, after he had received my referral and request for the test from the other doc. Even the front desk new what dysautonomia was. I must say it was one of the most refreshing appointments I have had in this endless search for someone to help me figure out what is wrong. He already new what he wanted to test me for before I even asked a question. When I said the TTT showed I had it, but that I didn't know why. He said, yes I know the causes of it are endless, some of them we can treat, some we can't. There are 2 approaches we can take, we can test for everything, because some people really want to know why, or we can focus on the tests for the conditions we know we can treat, and see if it is one of them.He then ordered the small fiber biopsy, sleep study, and all those scary tests that look for small cell carcinoma, panoplastic syndromes, immunofixation, immunoglobulins, amlyoidosis, and sjogrens. I've had all the blood tests and biopsy done and will have sleep study this wednesday. Of course, I'm not holding my breath that one of these will turn out to be the source, but it will give me peace of mind to know that the scariest causes have been addressed. Hopefully I will know the results next week.Also the best news is that I will be seeing Dr. Grubb at the end of august. Dr. Levine has said he will be happy to consult with Dr. Grubb on the best treatment plan for me. So, finally I'm in the hands of two specialists, one a cardio, the other a neuro, who really have the ability to get a fix in on this. After, all I've been thru of late, I guess god so fit to give me a really big cookie!Anyway I encourage any of you who have access to doctor's in the phoenix area to consider Dr. Levine or his partner Dr. Saperstein. Oh did I mention they do all their own small fiber testing at their center, because they are involved in research. They have a pretty informative website as well. I do know they take United Healthcare. Quote Link to comment Share on other sites More sharing options...
Nauthiz Posted August 4, 2009 Report Share Posted August 4, 2009 sounds kind of scary. When you think about all these weird causes. Lets just hope none of us have these weird degenerative diseases. Im going to my first neurologist in a week also in tucson, lets see if he knows anything like this guy lol. Quote Link to comment Share on other sites More sharing options...
Lizzegrl Posted August 4, 2009 Report Share Posted August 4, 2009 That is great Az girl! You will love Dr. Grubb I'm sure. Be prepared to wait, just a warning. They always always run way late, but it is worth the wait. ;0) Quote Link to comment Share on other sites More sharing options...
janiedelite Posted August 4, 2009 Report Share Posted August 4, 2009 Yay! I'm so happy for you that you finally have a good dysautonomia treatment team! I went through all those scary blood tests throughout 2008 as my local docs were trying to figure things out, and again when we went to Mayo this spring. Of course, everything was normal! But it does feel better when you know that you "just" are dealing with dysautonomia. Quote Link to comment Share on other sites More sharing options...
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