Back on IVSM

Had my neurologist appt today at 11:10 and went over my options. Tia talked to me about my DMD options and suggested maybe Rebif or Tysabri or to my surprise, IVIG. I know a lot about the former two but got some info on IVIG. She seemed to think it works like an immune system reboot and work really really well.

Meanwhile after going over my laundry list of symptoms she didn't think I had gone over to SPMS but just never recovered from my previous relapse and need the steroids. Oh well, my eye definately was cloudy, indicating a re-flare of optic neuritis. I also went over antidepressants and will give Lexapro a try starting at 2.5 mg at night and see how I tolerate it then titrate the dose up to maybe 10 mg. Gosh I hope it helps my outlook. The pain has just gotten to be too much and I feel like I just don't have the energy to fight it anymore. Sigh. She also suggested upping the valium, especially if I wake up in the middle of the night, like around 4 AM and cannot go back to sleep. She basically laughed at my only taking 1.25 mg twice a day. :( I hate drugs, I sure do. I want off all of them, but that's not going to happen as I realize. So I want to be a happy MS'er at least not a depressed patient. I have lots of living to do, but dragging through each day is so stressful and difficult. I feel so guilty for not carrying my weight in the family. I do feel sad.

I will have blood tests next week on Monday then the new set of MRIs on Thursday. I guess I will be in the machine for 2 hours doing brain, cervical and thoracic or lumbar, I forget. I go back to the Neurologist on November 4th and meet with her and the PA to discuss my options.

I gave them the unused Copaxone I had in hopes it might help someone else who has to wait a long time to get their drug or who needs a free 20 days worth. Also showed Tia my keenfit walking poles as I thought they might benefit another patient with the "wobbles." They are cool for anyone though who wants a better workout when walking. Check them out at www.keenfit.com.

The weather is gorgeous. The owls hoot at night. The male is a huge fellow with a 4 foot wing span and stands about 24 inches tall or more. Rain is in the forecast again for Thursday. Blech!
I am going back to sleep!

At the top is a small picture of the owl's last crop of babies from our front pine tree.

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.