Discussions By Condition: I cannot get a diagnosis.

neurological problems, history included, please help

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: Springs
  • December 9, 2008
  • 02:52 AM

I'm going to try to make this post as short and easy to read as possible, so. I'm 20 years old and female, 130 lbs.

Here are my symptoms:


Variable weakness, on some days I can't get out of bed for more than a few minutes without collapsing
Eyelid drooping and chronically noticably unequal pupils
Losing my balance and falling over for no reason whatsoever
Difficulty swallowing and talking
Periods where my vision blanks out but I'm conscious
sometimes i get a persistent tremor from elbows to fingers and from knees to ankles
occasionally really bad sudden confusion and disorientation, ie I forget what I'm doing and where I am and dissociate and panic, sometimes forget how to speak during this, lasts about 30 minutes
not sure how to describe this one - when I laugh, my joints go very weak, it's noticable most when I need to hang on to something. I was swinging with my friend and I was laughing and my hands suddenly just sort of lost grip of the chains and I fell out of it
chronic insomnia
generalized feeling of mental dullness, my neurologist diagnosed me with "mild cognitive impairment"
inability to say what I want to, I lose words, say things that make no sense out loud, etc
easily stressed over things toddlers stress over, eg two people talking at once (i can't understand anything either of them say), can't multi task with ANYTHING
some things look bigger in my vision than they actually are, much bigger, i've jumped over things to avoid tripping at the last minute only to find out that they're a half inch off the ground and my hands sometimes seem to swell (not physically, just in my perception)






HISTORY I have temporal lobe epilepsy acquired from head trauma when I was 8, but the seizures are under control with the medications lamictal and keppra (monitored with EEG every 6 months). I also have a pretty severe immune deficiency under the blanket PID diagnosis, it's not very well under control. I take antibiotics every day and I get IVIG every 2 weeks. Rounding this out is Romano-Ward syndrome which I was diagnosed with 2 years ago.

I have a neurologist but he just ran a bunch of blood panels on me, we're still waiting for results. Someone help :( I feel like this is getting worse, and he's run these panels on me before and they were all either negative or inconclusive.

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