Quote:
Originally Posted by lady_express_44
Lady, you know your progression rate over the years, and perhaps this is where you might ultimately see the most benefit
|
MS was going along nice and slow, having my kids, working and getting steroids, as needed. In the de-Nile River. My Neuro said I might stay RRMS with slow progression. Yeah right! I so believed him.
There were no MRI's in 1977 when they first tested me, or any meds but symptom treatment for my odd tremor, myoclonic jerks and myoclonic seizures, body buzzing had me daffy.
Then BAM! The exacerbations got closer and lasted longer. I was progressing quickly in 1999-2000. One attack overlapped the other. I had 4 a year. Started Avonex for one year, no help then Copaxone for 3 1/2 years. Went down to two attacks a year. I thought that was great.
I did do steroids with the "C" when needed. I have brain lesions, one brainstem and one C-2 lesion. One lesion is only seen on a certain slice positioning of the MRI on the spine, at a lower level.
Then all other meds just stopped helping me. So I gave up all meds. Had to give up my NYC MS Specialist too. I moved. I can understand why this new Neuro is reluctant to prescribe much for me.
Quote:
Originally Posted by lady_express_44
I was in a bad way, and going downhill FAST, especially in the last two years before LDN. More then anything I wanted to SLOW the beast!!  I got more then I bargained (and paid  ) for, but I realize I was very fortunate in that regard? |
I guess we took the same ride Cherie, the fast roller coaster from he!!
Quote:
Originally Posted by lady_express_44
As far as that "flush" or "rush", does it last about 30 min? I had that, but it stopped after the first several nights of a new dosage. Glad you've found the trick for you is to stay up for a little bit.
Also, did you always wake during the night (morning )? You said you sleep about 10 hrs, but wake often for bathroom, etc. breaks. Is this new?
Cherie |
The flush/rush is okay, but I like to have it before I lay down. It is a weird feeling, with a new drug. I have always had to get up for BR breaks. I drink a lot of fluids, coffee and water, day and night. I must have a tiny bladder but I have frequency, hesitation, and retention too, if I don't pay attention to my needs. Neurogenic, oh the fun, NOT!
Lady (I find I type and talk too much on LDN.) You have my life story now.
Brenda, I tried to post to you but it wouldn't let me. Gremlins in cyberspace.
I hope your increase to the 4.5 dosage goes well with you. I wish you lots of good luck.
Lady