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


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.

Tuesday, February 26, 2013

Pre-dawn raid

I will be dictating through a lens of bias and presuppositions. I am going to Mayo Clinic to see if I can ameliorate a nagging symptom of fatigue. Never use the words 'I think' as they have no use, except in the context where you want to make sure to the reader you truly have no clue. I'll be seeing a student neurologist most likely.

If I had my way, in this wicked world, I think I need this: 

Visual Evoked Potential EEG- Immediately would exclude MS in the context of a negative MRI.

Lumbar Puncture- The same as above, more intrusive and but possibly more rich data-wise. 

Whole body MRI- Exclusion of obvious neoplasm, visualization of the adrenal glands, reported to be decreased in size in fatigue. 

ACTH Stimulation test- To show possible low under the area of the curve for cortisol, a test with a much greater yield than morning cortisol. 

EMG- Would exclude motor neuron disease with insidious presentation, lowest likelihood of revealing anything relevant. 

My prediction is that I will receive none of the aforementioned. Yet, you can't paint a swell picture if the tools are locked in a cabinet. You can't paint anything. You just move your hand in the air and insist the problem is there. What's the matter, you can't see insanely complex psychoneuroimmunoendocrinological problem I may have? Me neither. We should start a club.

I see the forest, I see the trees, I need an ax so I can see the sun.