Discussions By Condition: I cannot get a diagnosis.

7 yrs and still no diagnosis...??

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: indigo
  • May 5, 2010
  • 00:24 AM

Hi All, This is my first time posting here... I am wondering if anyone has any suggestions as to what may be going on...

Firstly, I am a 27 yo female, mother of two (6 & 9).

About 7 years ago my health started going downhill. I started experiencing extreme fatigue that would bascially knock me off my feet, dizziness in which I would almost pass out like I lose my eyesight and vision for about 30 seconds but not pass out, and sleep disturbances where it became hard to fall asleep and wake up everyday feeling like I havent slept in a month.

I went back and forwards to doctors, neurologists, cardiologists and had bloods and tilt table test done where I was told that I may have POTS (Postural Orthostaitc Tachycardia Syndrome) which may be causing my symptoms. I was given nothing to help it.

My GP was less than useful in helping me and I basically gave up trying to get help with what was going on, so I kinda just dealt with it.

Over the years, I would get periods where my symptoms would get worse and id go down for about a week until I came right. I learnt what my limits were and what my triggers where, and tried to live a normal life around them.

In May 2009, I went downhill bad. I broke out in what I can only describe is near convulsions (or severe muscle spasms) and extreme fatigue. They doctors initially thought I had some form of movement disorder, but all my tests came back clear (Full Bloods, CT, MRI, EEG, ECG, Echocardiogram) so they said they didnt know and it would go away eventually, which after several months on risperidone it did.

Since then, I have had esispodes of weakness in my left hand, arm and leg, numbness in left hand and right side of face, which has progressed to almost my whole face now. These "episodes" last anywhere from a couple of hours, to weeks, accopained by that horrible fatigue and sleep problem among others.

At the moment, the numbness/weakness has not gone away after 2 weeks, I broke out in the muscle spasms thing again the other day after having a shower (warm shower as I am also heat intolerant), and the fatigue has be resided to the couch, which is hard with two kiddies...

I am due to see the neurologist again for another MRI.

Does anyone have any clues at to what this may be? After 7 years of being "sick", im sick of being sick!!


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