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Erika...another Update And Question!!


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OK. I have still be struggling to get answers. I saw a neuromuscular guy at Shands and he had no answers for me....I got my hospital records and one even said that my neuro exam was not valid as I changed when I was unobserved................can you believe he insinuated I was faking??? God help me!

So it is me and God and you all who believe me and are on my side. So I went to another visit today with a local nueromuscular guy..he examined me and almost immediately said it was a movement disorder (altho he will test for neuromuscular). He saw me start to shake like I do after activity (before I go into a full blown spasm)....and said he thinks I am having an orthostatic truncal tremor. I asked if it was related to POTS...he didn't know. He said he hadn't seen a truncal tremor in 15 years!!

:unsure: go figure.

Anyway...we may be onto something. See it is always being upright or movement .. has anyone heard of a coorelation? Has anyone heard of a truncal tremor?? He says my walking difficulties are due to problems in the trunk....coordination. So I don't know what all comes first...HR is always very high when I am having difficulties walking...perhaps I am just out on a limb here.

I know there are brains and support out there...I miss you....and need your input.

Erika

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Movement disorders: neurologic principles & practice

By Ray Lannom Watts, William C. Koller

page 438 (put truncal tremor in Google and go to this book on Amazon.)

There is a section about truncal tremors. They tend to be orthostatic (gee whiz!!!!!! who could've guessed?!)

It also lists the medications used to treat them. I have an exaggerated physiologic tremor in my arms, legs, head and tongue. :unsure: Fortunately propranolol controls it. Good luck honey, you've been down a rough road!

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Thanks guys!! I really apprecieate it.

I got my notes from Vanderbilt today as well. I don't even know how to interpret them....but basically I have POTS, mild parasympathetic deficits....abnormal cadiovagal response....whateveer that means...oh...and my ambbulation issues were said to most likely be psychogenic and I should see a psychiatrist! :unsure: Why would I need to fake anymore illness..I mean really....why..

Can you believe it!~!

How many of you have been called crazy? Gosh......too much!

Anyway...back to this tremor...any rilation to POTS do you think as it is orthostatic....my GP says yes....probably...my neuromuscular guys says doesn't know but it sure is suspisious.

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