RRMS or ??? / C or ???

[502E79]

Hi everyone. Looking for some input on this (good?) news....


So... Last month I had my first MRIs (brain, spine w / w.o., etc etc) since 2008 dx. I rejected MRIs over the years because I felt powerless (other than diet and exercise) against MS. And have been handling the pain without additional meds.... Important: I never experience any relapse or remission of sx, simply very slow progression.

At my appointment we go over the 2014 MRI results. His words; " no changes, nothing new and no activity.... Look's like the Copaxone is working."

I had been considering dropping the C altogether... I know and so does he that I'm getting worse.

Is C working or not? Is he claiming a "victory" when in reality I have always had SPMS (or some other version of this affliction), and it will simply do as it wishes, when it wishes, C or no C?

Thanks in advance for any / all comments or opinions. I'm not stressed but a bit annoyed regarding neuro comment VS what I know from reading the many posts @ MSW...

Jer

[Thinkimjob]

Well, six years and everything is going well. Why change what's working?

Do not fall lightly into the "I've got benign MS" trap. I thought that after 12 pretty good years. I was great. Ten years passed, and I thought, yay, if this is as bad as this is going to get, then I've got that handled.

And I enjoyed those years, but I took dmds the whole time, even though Beta made me feel like, and Copaxone is not all it's cracked up to be, side-effect wise.

Then that particular dream came to an end.

(Ask not for whom the bell tolls; it tolls for thee.
That was not the happy-clappy stuff we're supposed to do here, but that was the best and scariest, thing I ever read all those years ago - MS is benign, until it's not.)

All the best.

[502E79]

Thanks for the response Job, I appreciate your viewpoint.

My only thought was that the original dx was RRMS, and despite MRI results (MRIs can "lie", my first scans saw nothing for 3 years), my MS is progressing... never stopped really. No, I'm not for a minute thinking "benign." Just not RR. And from what I understand here @ MSW, DMDs do nothing to halt or slow progression with the exception of RRMS.

My unmentioned concern, at 64 yo, I'm about to go on what we here in the states call Medicare.... What that will do to me financially as far as paying for C.... i know nothing.

Once again thanks for responding, and good luck to us all!

Jer

[rdmc]

Thanks for the response Job, I appreciate your viewpoint.

My only thought was that the original dx was RRMS, and despite MRI results (MRIs can "lie", my first scans saw nothing for 3 years), my MS is progressing... never stopped really. No, I'm not for a minute thinking "benign." Just not RR. And from what I understand here @ MSW, DMDs do nothing to halt or slow progression with the exception of RRMS.

My unmentioned concern, at 64 yo, I'm about to go on what we here in the states call Medicare.... What that will do to me financially as far as paying for C.... i know nothing.

Once again thanks for responding, and good luck to us all!

Jer

I'm only a few years behind you in age, and had been on Betaseron for about 8 years.

When my progression became slow but steady with no relapses, and my MRIs remained "stable" i.e. nothing new, but problem lesions not resolving either, my neuro said I could quit the DMD...and I did. This was over a year ago, and I probably "feel" (at least energy wise) a little better than when I was on Betaseron and I don't have a morning after headache...which was really my only noticeable reaction to Beta...other than the red blotches, of course.

Progressive diseases progress (stolen from Richard Cohen) and we know our own bodies. I continue to note the decline, not necessarily in the form of new symptoms, but just in deterioration of the "normal" ones.

I can understand your question about MS and DMDs...it's a cr@p shoot because if we've taken them and our MRIs are stable, then the docs chalk it up to the DMD. But if we were like Snoopy who never took a DMD, or Marc from Wheelchair Kamikaze whose MRIs have looked the same for years, yet he has steadily declined, despite trying every med and therapy available...the neuro couldn't come to the same conclusion. We just do the best we can with the info we've got...make our decisions and carry on

I was pleasantly surprised yesterday when what I thought was a spasm in my bad hand, from MS, turned out to be just an everyday problem that can affect anyone. At last, something not being caused by my MS. My heart issues and BP issues, after lots of testing were found to be due to my MS. Breathing problems and use of a CPAP...MS. Pain is due to spasticity, but relieved, in my legs at least, by the pump and other places by oral baclofen.

I think we need to check out our general health issues with docs and not blame everything on MS or aging...but truth is, almost all of my health issues are directly related to my MS. Otherwise I'm a pretty healthy person (if you just looked at my lab blood reports.)

As to your ability to get by without meds (other than the C) good for you. I take a handful, but they do help my symptoms. Don't be hesitant if there are symptoms you can't deal with to ask the neuro if there are meds that would help. I'm a firm believer in symptomatic meds.

Hang in there.

[Jules A]

I often wonder the same thing. Although I am technically in good shape and able to work 50 hours a week does the creeping progression in symptoms and stable MRI indicate I don't have RRMS?

I had two distinct flares with vision impairment in the first 6 months and since then only minimal but definite progression in different areas that indicate to me my MS is not lying dormant.

Don't be too hard on your Doc, I truly think most of them really want to believe these medications are helping us. At least we have something to try as compared to not so long ago when there was nothing.

[KatieAgain]

My heart issues and BP issues, after lots of testing were found to be due to my MS. Breathing problems and use of a CPAP...MS.
.

RDMC...I am sorry you are having heart and lung issues with your MS. This is something that a lot of people don't know about. And it landed my butt in the ER a few weeks ago. I hope whatever lesions are causing this heal for you.

502- I too will say what Richard Cohen has stated, MS is a progressive disease and therefore it progresses. Even on a DMD it progresses. Me, myself and I would keep on taking those shots. I personally would never mess with success. Ask yourself, "Do you feel lucky?" I never feel lucky with MS. I know your probably not going to like this, but I think your doc is correct.

I take few meds as possible, but if I need them...I pop them...right into my mouth. I refuse to wait out the storm. It makes MS a little more tolerable.

Good luck with your decision.

[502E79]

Thanks for more comments. Feedback from trench mates, regardless of affirming or dismissing these demons runnin' round in my head, keeps me grounded.

Thanks rdmc re: your Neuro's comments, at least they are not all in "lock step" Cost to continue C, will play a part as I approach Medicare age / decisions.

And also appreciate KatieAgain with "...personally would never mess with success." Guess I'm already doing that... last fall I began alternating shots to arms (since they are so very, very tight) therefore creating a "stockpile" of C. (If Teva says 3x40cc's @ week is OK, I'll skip a 20cc injection @week ;-)

Jules, Yeah, the doc means well. Just impossible to get inside everyone's head with a 15 minute appointment. In my experience the ominous potential MS carries can outweigh reality, affecting all our decisions... if we allow it.

Jer