Wednesday, March 6, 2013

It's been...

A week has passed since my first appointment. My appointments are split up into two weeks, so I have left and must return to Mayo. I chickened out not asking for an EMG, an LP, adrenal tests or a full body MRI. I can complete the latter two by myself.

Plus the EEG will just be a standard one, and really useless without a visual evoked potential. I may have low adrenal reserve, and the full body MRI is likely to be of equivocal value.

The drugs I'd like to try are:

Tenex: sympatholytic, I'm not sure how useful it will be, it lowers cortisol.
Naltrexone: Releases cortisol via an unknown mechanism, it's probably epinephrine but no one has tested the c/causation.
Nefazodone: some research in CFS.
Dexedrine: I'd like to at least try it. It's variants have not been helpful to me thus far.
Prednisone: Full replacement dose.



Sunday, March 3, 2013

Delay

It's 4:22 AM Rochester time, and I completed one of my midterms just now. My appointments were split up over a weekend, I have EEG @ 7:15 and neuro testing @ 7:45 on Monday AM.

Be prepared to answer where you are from a lot, not too much leeway as far as appointment scheduling is concerned because everyone is from everywhere else.

In the three years pre-MS diagnosis, 30% of MS patients were lumped into a CFS or malaise category.