Posted by nique (18.104.22.168) on February 07, 2000 at 01:43:50:
THIS IS A COPY OF A PORTION OF AN EMAIL TO BENNIE SUE, SHE SUGGESTED I SHARE THIS:
We (mostly my husband) have just gone through ten days of hell and then something odd struck me. I have MS, (multiple sclerosis,, we make quite the pair sometimes!) Anyway, some of my symptoms are rather strange and related to the depletion of the sheath that coats the nerves in the central nervous system predominantly the brain. I have excruciating pain that will run the course of my spine and shoot up through my head, feeling similar to having the top of your head blown off. This, I know from watching Greg, is nothing like what he has to endure, but it is the symptom itself that gave me cause to think. You see what I have is caused by misfiring of the nerves in the brain, almost like short circuits, this causes really weird and "wonderful" (not) things to go on in my body. Some of these things are various strange kinds of pain, I have through talking to others with MS discovered that if you "fool" the brain into concentrating on something else it can help. So when I had the lightening bolt headaches, as I call them, Greg and I would rub ice, rough cloths, silk, hot packs etc. on my legs and arms and back. This alternating sensations somehow worked. So when I read the report on the CH website from that doctor saying about the extra gray matter in CH brains, I thought maybe something like what I have is happening. So two nights ago we tried it,..low and behold it worked. The first night he sat on the floor (abject fear of the bed!) infront of me on the couch. He rested his head and upper body on my lap and I rubbed his back neck and shoulders all night (7hours) with various things, smooth, rough, soft, hard. HE SLEPT RIGHT THROUGH! We did it again last night and everytime the slightest inkling of a CH appears, so far so good. Three days and counting. He is laying down on the bed now, and has been since 8:00pm almost 3 1/2 hours, here's hoping we've hit on something.
Anyway that was more than I planned on dumping on you, thanks for listening, I can't tell you how much of a comfort it is to have read all the stuff on the website. I have a whole new insight on his agony, though I know from being with him, to hear others describe it too, and hear him say, "Yah, that's it, that's what I was trying to explain,.." makes it easier to help him. 20 years, and we're still holding eachother up, CH & MS ain't going to do us in yet!! :)
Hope your doing well, and thanks again for your response and advice. I will let you know how the hot tub works, may be a while before we can afford one though.
PS He got up at 11:45 with a whopper, I used this massage device given to us by a friend that they had purchased at the Body Shop, two metal bars bent in v's welded at the v - four wooden balls attached to the ends of the bars. You hold one ball and the three others then make contact. Seems to work best, and thanks to the MS holding anything is not easy, nor using my hands, so this works well, I do his back shoulders, neck and even his head alternating soft and hard, slow and fast ~ FIVE MINUTES ~ GONE, gone! No meds!!! This is a first in 20 years! He's been back in bed since midnight, I can hear him snoring behind me! :)
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