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Hi Everyone,
After reading the majority of the posts, I should consider myself lucky that I have not been suffering as long as most of you have, but I guess it really doesn't matter how long we have been going through this, what matters is we are not being properly diagnosed.
My problems began this past February. It began with symptoms of a stroke. The scans were clear, and I was told it was a migraine without head pain. Three days later, I got the worst headache I have ever had. I could not move without screaming out in pain and vomiting. I was rushed back to the ER where the Dr. told me it was a complex migraine, and I was given Vicodin for the pain and sent home. The next day, the headache came back; along with the symptoms of a stroke again. I had a different Dr. this time and he did an MRI of my brain and told me it was a rebound migraine and he put me on an IV of Compazine, Decradron, and Vicodin and told me to follow up with a Neuro in 2 to 3 days to find out what was causing these migraines.
This was on Tuesday, my appointment with the Neuro was on Friday. After leaving the ER that day, my body started jerking all over the place. I could not stop no matter what I did. I called the ER and spoke with the Dr. that had treated me earlier and was told not to worry, because it was from the high dose of decadron that they had given me, and it would go away in a couple of days. By the time I got to the Neuro on Friday, it was so bad that I could not stand without falling over. My husband had to hold me up so I didn't fall. The neuro reviewed my scans and told me they were fine, and that it was a reaction to the Decadron; and that I would be fine in a few days once it was out of my system. After jerking for 3 weeks straight I called him back. When he walked in the room and saw me, he looked at me and said, "I don't know what it is" he gave me klonopin and sent me on my way.
A week later, when I woke up, I could not see out of my right eye, everything thing was gray. I went back to bed and when I woke up, I could see, but had double vision. I told my husband to take me to a different hospital and maybe they could figure out what was going on. I was admitted for 5 days, pumped full of Ativan, and was told to follow up with a movement disorder clinic because whatever I had was idiopathic. When I asked him what he meant by that, he told me that they didn't know what it was, but this clinic could help me. This was on March 9th, I couldn't get into the clinic until May 14th.
During this time, I found a new PCP, I had a follow up with him at the end of March. They ran a bunch of blood work that has indicated that there is something wrong, he's just not sure of what it is at this point.
He suspected polycythemia, due to some of my bloodwork results but for right now, he wants to do more testing to be sure.
My appointment with the Movement Clinic was a waste of time because all she told me, was that I have Myoclonus. When I asked her what we can do about it, she basically told me that there is not much that she could do for me due, to the fact that the medications that they use for it, I have already tried and they have proven to be ineffective for me. She also stated that it may go away on it's own or I could have it for the rest of my life. There is no way to tell. I will just have to wait and see what happens. She said I could try a little bit of alcohol, because the ethenol will calm down the muscle spasms.
I was watching TV last week, and came acrossed that Mystery Diagnosis and there was a girl on there that had all of the same symptoms that I do. Her's started the exact same way as mine did and in the end they ended up diagnosing her with Antiphospilipid Syndrome {APS} when I saw the way she was moving her body, it was like looking in a mirror. I'm going to mention it to my Dr. when I see him on July 9th. I figure it can't hurt, and if he can tell by looking at my blood tests that have already been done, or by running any that my determine this then maybe I can start my road to recovery instead of being stuck in limboland.
Thanks for reading my story, and best wishes to all of you.
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