Discussions By Condition: I cannot get a diagnosis.

Baffled 3 Neurologists: Now what do i do?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: suzie71
  • April 29, 2009
  • 06:43 PM

I have been experiencing numbness and pins and needles throughout my body for the last few months. It is mainly on the left side of my body, but my right is affected at times also. At first I blew it off as a pinched nerve, but in February of this year my condition has completely changed.
The first thing I experienced was symptoms of a stroke, I was taken to the local ER where a ct scan was performed. A stroke was ruled out and my diagnosis was an opthalmic migraine. This happened on a Friday, all weekend I didn't feel well, my left arm felt very heavy, my balance was off and I had an overall feeling that something was wrong.
On Monday I was awaked by the worst migraine I have ever had, I could not lift my head off the pillow without crying out in severe pain, I started vomiting, and my eyes were rolling back in my head. My husband took me back to the ER where they gave me medication in an IV for the migraine, they did bloodwork and sent me home with the diagnosis of a complex migraine. The next day I was back at the ER because the migraine and the numbness came back. They did an MRI this time and told me it was a rebound migraine and they gave me different medication and they put me on a steroid to shrink the blood vessels. By the time I was being discharged my whole body was shaking, the doctor told me it was because of the steroid and it would go away within a day or so. I was then referred to the first neuro due to the severity of the migraines.
I went to the neuro that Friday, by this time the shaking is so bad that it look like I was having seizures. He evaluated me, took me off the steroid, gave me some sleeping pills and told me to sleep the weekend away, and by Monday I would be fine. Monday came and I was not any better at all, so I called him back and they told me to wait a couple more days to get the steroid out of my body. I waited 2 weeks and when I called him back he referred me to someone else because according to him, he didn't know what it was.
I went to a different neuro, at this time and he also told me that is was because of the steroid and he put me on Klonopin. This was on the 25th of February, I took the Klonopin until March 5th. When I woke up that morning I could not see out of my right eye. I was at my wits end at this point, My body had been shaking violently since the 10th of February, I had lost 10lbs and I was exhausted. I told my husband to take me to a different hospital because I was ready to check myself into a mental facility at this point.
When I got there, I was admitted immediately. The ER Dr. told me that something was wrong and he was calling in a neurologist because he had no clue what was wrong with me. The neuro came in the next day and told me that I passed all of the neuro tests, and that my condition was not caused by the steroid, it was caused by one of the other medications that I was given for the migraines. This neuro put me on Ativan which helped for about 2 weeks and then it quit working.
I went to my GP on March 27, and they put me on Haldol and told me that I have Chorea and they referred me to a movement disorder clinic. I go to them on May 14.
Sorry this post is so long, I just don't know where else to turn, you would think by now that after all the testing they have done someone would know how to treat this condition. All of the medicine they have given me only works for a short amount of time and then it starts all over again.
Thanks for taking the time to read all of this, any advice is greatly appreciated.

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