This Is MS Multiple Sclerosis Knowledge & Support Community
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
1eye wrote: Longer. Much longer. Clarity sometimes depends on the direction you look, and whether you are blind. You keep waitin, won't you? There's some 'myths' around here I wish would linger no longer, that's for sure.
1eye wrote:Just thought you might want to hear from the non-naive, jaded crowd. It works for me. I think it is working for a lot of others. Probably a majority of the over 12000 people who have been treated with venoplasty.
Well, you seem to be one of the biggest proponents of CCSVI and how well it "works" (your words). Please tell us all again of all the improvements you've personally noticed.....????
Stamina: I can walk at least twice as far. Still using the walker.
Speed:If you could get my timed walk numbers out of Dr. Freedman I could tell you my 500 meter speed too, but I'l measure it now anyway, just for fun. I have been told by other people I'm much faster. Example: I used to expect Jan would catch up with me after going off to park the car, before I got to the exercise room where the Nustep machines are. I have lately been in the room a few minutes before she got there. Anyway, my measurements are not with an approved stopwatch person so I doubt you would accept them.
Fatigue: I don't have any. Just not back up to full strength yet.
Are you looking for my speed numbers? Coming soon to a theater near you.
EDSS: probably down about 1-2 points. No longer use the wheelchair.
I'll do the PASAT again soon too. And the 9-hole peg test. I don't feel concerned about that because my hand strength and dexterity are much better on the piano. Repertoire is improving, too. I saw Billy Joel at Shea the other night. Can't even imagine being able to play like that, ever, though I was pretty good on guitar when I was well. Used to play in local bands, and did solo concerts, as well as with a fellow singer. Aiming to play guitar again, maybe soon.
I'm off one of my fatigue meds, one depression med, and baclofen.
Still on heart meds. Not intending to stop those.
Have a kinestheologist helping with physio, mostly strength, some balance, working on my drop-foot. Up to 30 minutes at level 8 on the Nustep (before procedure ai could only do 10 at level 6, since my heart attack). Can get to the Nustep only once/week as I still don't have my driver's license back, but weights seem best if I do them every other day.
No bladder or bowel problems. This is a big one for me.
I had a kidney stone, and my neck, back, and leg are still lop-sided due to loss of muscle mass. Working on it. Some pain due to those, but far less. Have really slowed down on the analgesics.
Sleep is fine, though this forum and the election are keeping me up late nights lately.
I transferred somewhere between 100-200 LPs to digital. Still working on the collection. Hope to bar-code-scan all my books. My wife is a librarian, you see.
The other day we shredded bank records back to the 1990s. I got a sore back, but temporary.
Sexual function and potency have improved somewhat. Not sure how you would measure that. I *am* 57, after all.
I was on Tegretol for trigeminal neuralgia, but my dental technician
pointed out it makes you have reddening of the gums, so I tried going without. No neuralgia!
Swallowing: problems seem quiet now too.
Speech, well, I hadn't noticed but many people have told me it has improved. My niece is a filmmaker and she filmed me a few days before, so once part 2 gets done (she has been ill) I'll have something for youtube or somewhere (working on having a shared web site with my daughter, who wants to be a portrait artist).
QOL improved somewhat.
Next question?
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
Oh I've been on the field. I mentioned that I didn't have time for hypo perfusion earlier today which maybe wasn't taken the right way.
That wasn't an admittance that I'd been neglect in reading the CCSVI info because I have access to the journals through my employer and I imagine I've read more of pertinent full articles than most AND that also wasn't to say that I've lost interest in CCSVI but I just can't see spending hours and hours on hypo perfusion before some MUCH more basic things about CCSVI have been shown.
thornyrose76 wrote:Forgive the personal questions but do you have MS or do you work for a doctor, scientest or are you a physician?
I'm not in the medical or scientific fields in any way and it's within your right to ask.
My wife was diagnosed in Jan or Feb of 2006 but I've always been interested in scientific things and specifically situations surrounding the "autoimmune/inflammatory" diseases since the late 70's.
After diagnosis my wife was on Rebif for a little while until her liver enzymes elevated. By the time her Dr said she could start again she had lost interest in injecting and feeling like crap. Soon after she enrolled in the Tovaxin IIB clinical trial, we found out later that she was on the "real thing" and she hasn't been to a neuro since and to our awareness she hasn't experienced any progression.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
