Discussions By Condition: I cannot get a diagnosis.

Paralysis, muscle weakness, adrenal surges can't find an answer.

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • December 7, 2010
  • 04:41 AM

I have an extensive medical history over the last few years that would leave even the best doctor in shambles. In the beginning I came across with psychiatric issues. I startled easily, had horrible nightmares, and no matter what combination of RX I was put on nothing, NOTHING could fix the terrible depression I fell into. I stayed in a semi catatonic state of a major depressive episode for the first three years of my adulthood before emerging into the world from being institutionalized. It took a huge dose of Effexor, 600mg to kick me out of it. I was diagnosed with PTSD. Told repressed memories caused it.

After getting on my feet a bit I decided to pursue finding out why I was so tired. Beyond what any medication could do to me. I also experienced more and more episodes of suddenly falling to the ground, when I became angry or frightened. I also would spend days in bed, wishing I could bake, or go for a walk. But some days my muscles in my arms and legs and neck became so weak I couldn't move. They felt like bags of wet sand hanging off my body. It also became difficult to hold my eyelids open. So in times where I couldn't force myself to anymore, my neck would not be able to support my head and my eyelids would shut. Giving the appearance that I was sleeping while sitting up.

My primary doctor referred me out to a sleep specialist who performed a MSLT and diagnosed me with narcolepsy. Despite not having any REM during my naps. I fell asleep within 2-3 mins, but she explained that because we could not take me off of Effexor that it could and probably would block the REM. As that was it's job in using it for Narcoleptic patients. She also diagnosed me based on the fact that I have paralysis that causes me to fall or loose control of my neck and arms. Cataplexy. Despite treatment for the narcolepsy, the muscle weakness only seems to get worse and although I am up to 75mg of Concerta I still have to lay in bed at least 10-12 hours a day.

In the last six months another symptom has emerged, although seems related to my fear response. At completely random times throughout the day, not everyday, rarely more then once a day I will become irrationally angry. Now you can say this is related to my psychiatric illness. But I have never been known to become angry. And it seems to come and go in 5 minutes time, ending with my muscles failing on me. It sort of reminds me of a dramatic panic attack, with no trigger.

In with all of this may be unrelated I have had GI problems for the last two years. I spent two weeks in a medical hospital on IVs to keep me hydrated properly. And it became difficult to swallow. I was told the difficulty swallowing was due to flashbacks from the PTSD. I then saw a GI Specialist, who found nothing and diagnosed me with IBS. The problems have continued, I've gone to my doctor once since then and I've dealt with it alone, as he just tells me to keep downing the Imodium. But that's just a cover up and my system will eventually get used to it. So I've dealt with it on my own.

I also have had my gallbladder removed a few years ago. Again no good cause. No gallstones. It wasn't functioning at all and it had sludge. My pulse also skips beats. And no good cause. So badly that the times I've fallen and people have taken my pulse for a few seconds they've panicked over whether I was dead or not. I can feel it doing it in my chest when I'm experiencing extreme muscle weakness else wear. It's like my heart muscles become weak also. It's very scary. It becomes hard to breathe at times.

Does anyone think my diagnosis. Narcolepsy and IBS are correct or should I be prodding doctors, who don't take me seriously, because I have a psychiatric illness.

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