Hi RLR,

I have had some testing done..

I was curious as to why I could not feel side effects of meds (like tiredness etc)..  I can feel the effects somewhat.  But I had a test done that checks the DNA Genes called Amlichip test.  It shows I am a "poor metabolizer" of medicines, which means I should feel the affects right?  And since I do not, the medcine is building up in my body?

I had bloodwork done to excluse lupus, lyme, etc (ANA testings) and had testing to check for celiac disease, pheochhromotosis, carcinoid syndrome, and ESR which was slighty elevated.   So all my bloodwork looks good, which is good. Was tested for heavy metal toxins which was good.

But I continue with the burning on the skin, with flushing on my face. hyperreflxes.  When I feel pain is is mainly in my head and my speech feels fuzzy.

I have noticed a pattern with the past 3 attacks during the past 6 years.

First it started off with weakness, unsteadiness, then my skin burns and blood pressure and heart rate go up.  My Neurologist said I did have hyper reflexes at my last appt and said to just wait for this attack to go away.

But I wonder (since the Mayo wondered this 6 years ago) if what I may have could be some sort of CNS Vasculitis.  

I still continue with the insomnia (even with all the meds I sleep maybe 3-4 hours), weight loss and diahrrea as well.  I am seeing a counselor who does CBT and hoping it will help dealing with the unknown.  

Currently my Dr has me  on:

Klonopin 1 mg 4 x day
Remeron 30 mg at bedtime
Temazapam 30 mg (2 at bedtime)
Keppra 750 mg twice a day

My Dr said she will continue this medication and if in 3-4 weeks nothing changes she will take me off all meds. and start over. and reevaulte.

So those are my meds..

Here is the website explaning CNS vasculitis.  Could this explain some of my symptoms?  If so, what should I ask my Neurologist?  

http://www.hopkinsvasculitis.org/types-vasculitis/central-nervous-system-vasculitis/

And if its not this then I worry about the sporadic insomnia.




Thanks in advance.  I am doing my very best in dealing with all this.  Its not easy..... I am definitely worried...