Hi Mat52, and Healthgirl, and JoannaP79,

You all sound like perfect examples of my Immunologist's saying, "We use the tests we have, not the tests we need."

Once we get to the advanced stages of Immune Disorders, each of us may exhibit different problems, and probably problems that have no diagnosis at this time.

I was tested for CMT last fall, which is a genetic condition causing neuropathy. I knew I didn't have it, but it was the only genetic condition I hadn't been tested for so the specialist was so hopeful.

Doctors want to find a diagnosis that we fit into. If we don't fit, it is very difficult, for all involved.

It takes a while to understand that NOT fitting into any existing diagnosis does NOT mean that we don't have serious, painful, disabling conditions. It just means that the diagnosis doesn't exist yet, nor does the test, and sadly probably not the treatment.

However, it is possible that treatments for related conditions can be helpful. Certainly anything that alleviates pain and discomfort should be used.

I am now experiencing almost constant seizures (mild mostly), and trembling, and shaking hands, which have no diagnosis at present. Earlier I had two EEGs and one overnight sleep study with an EEG, and nothing has shown up on them.

The Medication I'm taking for the seizures is Depakote, which hasn't helped at all at my current dosage of 1250 mg/day.

To top it off I have the first UTI in over 4 years, so I'm sick. "It's always something".

Do keep us posted on this forum. Isn't it wonderful that people with highly unusual conditions/problems/symptoms can meet and share here.

Hugs, ElaineD