[KarenMarie]

I would like to know how many of us are using one of the MS injectables either at home or as transfusions in a clinic or hospital - also our ages and the frequency of more flares and/or lesions - will try to come up with poll questions that cover all of us - my apologies if I inadvertently leave something out - will try to attach a poll -

[lady_express_44]

I have had MS 17+ years (can date back symptoms almost 30 yrs though). I am 48 yrs old.

Only ever used LDN, for the past 3 yrs. I have had one relapse during that time, that lasted several months (due to untreated infection).

Before getting on LDN, I had been experiencing relapses every 3 months for the prior year, and only had two BIG relapses prior to that, 12 yrs apart. My worst lesions are spinal, and I have few brain ones.

Cherie

[CBo79]

I am 28. I have been dx'd since 2005. I am currently taking Ty, but I have tried Rebif and Copaxone. I had flares 1 every three months for the first year. 1 every 6 months since then. My lesions are all brain, but I haven't had a spinal since dx.

[Nevada Leftie]

I think you left out those of us who have never had a flare. I am PPMS and as far as I know there are not any medications, either, appropriate for us.

[greta]

Poll was kind of odd so I'll just respond here.

Avonex for 2 years
Rebif for 4 years-present

No flares at all. No new lesions and nothing highlighting in 5 years (based on annual MRIs from 2/03 through 4/08). No symptoms, no fatigue, no heat sensitivity. No nothing.

edited to add that I'm 30-40 years old

[doydie]

Dx in '97, started Avonex then, still on it. Last flare in '99. Am 58 now.

[Becky21]

I think this is a very good thread. If there is a category left out, we can tell our stories. None of us have the same symptoms or experiences.

Diagnosed in 1992 with RRMS, 1993 with SPMS. Exacerbations all through 1992, symptoms became permanent in Jan. 1993. I had to quit work permanently and go on SSDI in Sept. 1993 at age 42. Progression has been very slow over the years.

I probably had MS much earlier because I had some strange symptoms that were unexplained and went away.

My MS became apparent after back surgery performed in Dec. 1991. My doctor's now think the back problems are MS related.

My blood pressure and pulse kept dropping and I developed heart arrhythmias. The doctor's did not think it was safe to put me on DMD's because of my heart problems. The heart problems became worse until I had to have a pacemaker implanted in 1996 and take a medication to control the arrhythmias. The doctor's now think the heart problems are MS related.

I had never been on DMD's until my Neuro started me on Avonex in Aug. 2007.
She thinks it may help my cognitive problems from getting worse. We will only be able to tell if it is helping by watching how I do. I had a rough start on Avonex but now it is going very well.

I haven't had an MRI since 1994 and can't have one since I have had a pacemaker. Just had my pacemaker replaced 7 weeks ago.

[freeinhou]

I was told I had MS in 1988. It's still RR - my semi-annual exacerbation started last week...

No drugs.

No spinal lesions. ~ 30 brain lesions. Haven't had an MRI since 2003 though.

50 years old. Nobody except family and a couple close friends know I have MS. I still live/work/play a relatively normal life.

I'm seeing a neuro on Thursday (not MS related). Maybe he'll tell me something I don't know. Actually, it may be MS related. Right now - it's just a really annoying nerve pain.

Tom

[lady_express_44]

So, what we know, so far is ...

Approximately 85% of us are on one of the DMD/T's.

About 63% of us have had the disease less then 10 yrs.

Approximately 33% of us still have regular relapses (don't know if it is those on/off DMD's)

Close to 70% of us are between the ages of 30 - 50.

What might this tell us?

Cherie

[KarenMarie]

I was trying to get to whether or not the meds were working sufficiently well to balance out the cost - both in $$ and side effects - guess I didn't get that part of the poll correct - perhaps those of you who read this might take a minute to note here whether or not you are on the meds and still having relapses and if you are having relapses - how severe are they ???