Monday, October 19, 2009

Neurologist Appt tomorrow

I moved my Neuro appt up to tomorrow since I am having a rather rotten time of it lately. The fatigue is overwhelming and the lower back pain is excruciating. I seem to sleep half the morning then cry for a while and then pull myself together and try to do some stuff in the afternoon. Gosh I hope the snake venom stuff gets here this week!. Cobroxin. Its new and it seems to be just an amazing pain killer!

I am working on my thyroid and adrenal glands, both of which are not being well behaved. I think the solumedrol drip used up the last of the cortisol I was making and left me not only with no stress coping skills but with a really high reverse T3 level. I did my own blood tests this past few months and am treating with replacement doses of hydrocortisone and cytomel. I should be able to clear the Rt3 (a huge fibro problem) in about 12 weeks which should reset my thyroid. I will take the cortisol for a few months too until I build up reserves and then wean off slowly in hope my adrenal glands will pick up the slack and go back to normal. Right now even the slightest though of stress causes me to get all shaky inside and pour out a huge surge of adrenaline.

I will ask the Neuro for some help with the emotional lability, gastrointestinal issues, sleep problems and pain. We will probably go over other choices for DMDs. I am very tempted to discuss Tysabri (gasp) even though the side effects are horrendous (PML). The people it has worked for have done really well at getting some function back and it does have double the efficay of the other DMDs like Betaseron, Rebif and Avonex. It is a once a month infusion at the infusion center and my Doctor is cleared for the touch program and has an infusion center right next to her office. Also Fampridine, (4-AP) is almost ready to hit the market and I want to be first in line to give it a try to get some walking ability back. It has a good safety record at low doses and folks have gotten mobility back and swear by it.

Also might get into stem cell transplant stuff by mentioning the Israeli project. But after dealing with breast cancer, I am not so sure I would be a candidate for it. I would like to do this after they get the hospital in Tel Aviv certified to infuse the stem cells back into the spinal cord as I have read horror stories about the hospital in Athens and don't think I would like to travel to turkey either. Not unless I was healthy of course and on a vacation!

Then there is the depression. Some days I am better than others, but if I miss a good night sleep I am wiped out for 2-3 days and unable to walk, think or otherwise function at all.


  1. Did your Cobroxin ever make it? Did you end up trying it?

  2. I got the cobroxin and find the gel helps a lot, if I can remember to put in on sore spots 3 or 4 times a day.

    As far as the oral spray goes, it doesn't seem to work as well as expected, but since I am still a light smoker, that's to be expected since Cobroxin attaches to the nicotine receptors. If I could quit, it might work a lot better!