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Old 05-08-2007, 11:05 AM
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cyclelops cyclelops is offline
Magnate
 
Join Date: May 2007
Posts: 2,049
15 yr Member
cyclelops cyclelops is offline
Magnate
cyclelops's Avatar
 
Join Date: May 2007
Posts: 2,049
15 yr Member
Default on meds

Daniella,

Have you had a skin biopsy for small fiber neuropathy? Small fiber neuropathy doesn't show up on EMG.

Some people, like myself are extremely sensitive to anticholinergics and serotonergics which comprise most of the antidepressants. Elavil (amitriptyline) is very anticholinergic. Some drugs are also antidopaminergic and that causes restless leg for people. We all have a unique drug tolerance fingerprint, that actually can be genetically tested, however, due to expense, it is not routinely done. What works for some people is absolute disaster for others. Blood levels of Elavil need to be monitored and many physicians simply do not do it. I get horribly ill on any serotonin reuptake inhibitor and had bad experiences with tramadol and cymbalta and everything in between. Elavil was not for me either. It has taken multiple bad reactions for the medical professionals to see what happens to me on those drugs. It is now finally documented that I can not tolerate those medications.

There are many neurotransmitters that are affected by small fiber neuropathy and the current medical approach is hit or miss, because that is all there is. It is so complex.

It sounds like something is definitely wrong, but some diagnoses, are ones arrived at by 'ruling out' others over a period of time. It seems that the skin biopsies, which are actually biopsies of nerves in your skin would answer the small fiber neuropathy question.

My suggestion is to try to get to a good neurological research center that does advanced testing. It took me about 10 years of being diagnosed with fibromyalgia and psych disorders, and other stuff, before a cardiologist figured out my cardiac response to maximal exercise was abnormal and he got me to a very good neurologist.

There are neurologists and there are neurologists.....some treat the mundane and some really search and dig for what is really wrong. I have not only peripheral neuropathy (sensory and autonomic) but also something not functioning in my central nervous system as well. Healthwise, I am on shaky ground. I am eternally grateful for a neurologist who understands what he knows and does not know, and is very frank with me. He is also very compassionate. I go to a research center affiliated with a medical college.

On the orthotic shoe, you have to get used to them. Wear it only as long as you can tolerate. It can take months to get used to them. I have orthotics in my shoe and it took forever to get used to them. Every two years or so, they need to be refit...and I am getting to that time again.

Hang in there. Somedays are worse than others, and you will have some good days again. Keep in touch with your doctors and get support where ever you can.
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