transitioning to progressive ???

[JonM]

This is more of a story than a question,

I have been DXd with MS for nearly three years and probably had for 5 years prior to that.  I was DXd with relapsing remiting but now I'm pretty sure it's morphed into progressive.

I did have a major exacerbation three years ago and it did cleary remit about 90%, left some numbness on side, some ringing in ear and some buzzing burning in feet.

I had a milder exacerbation about 9 months later that blurred my vision some and weakened my swallowing as well as introduced some cognitive slowness. Some which has gotten better over time.

All the while I seemed to progress ever so slightly, with my existing symptoms getting worse.

Also all the while I took Avonex and I was a faithfull in that it was worth it and was doing me good, and I figure the 2nd exacerbation would have been much worse without it.

Well, in April I had my gallbladder removed and what was suppose to be a simple one day surgery turned into 6 days in the hospital and weeks of painful recovery and wound that didn't want to heal (a long story thats not completely finished yet).

I quit taking Avonex then. I just couldn't deal with the two issues at the same time. My doctor said it would be ok to skip a dose or two. And I ended up skipping about 6 doses before I felt better and then felt so good that I decided to stay of it or at least convert to Tysabri or Rebif. I realized then that the majority of my headaches and the weekly flue went away and I really felt better without it.

So my regular Nuero appt came and I told him, which needless to say he was not thrilled about and made this "poker" analogy where MS has a set (three of a kind) of Aces and I'm holding a flush draw.  (Flush draws usually don't complete and therefore loose). And I'm taking a great chance here that I'm wrong.

However much to my surprise he did not want me to go on Tysabri (too risky and that my MS wasn't that bad) or even want to change me to rebif (to avoid) the weekly flue.  He supported my staying off any medicine as long as my MRIs are stable. He didn't go so far as to relabel me but he did order an MRI which the result was the same as the one I took last fall, no changes. He has allowed me to stay off DMDs until the next exacerbation (which I think will never happen) or until the MRI shows new lesions (a follow up in 5 months). If that MRI is stable he will go to once yearly.

So here I am, I guess getting use to the idea of being progressive (actually in some ways welcoming it). Of course hoping for a new drug that can help progressive, and hoping that it's so slow that I will remain ambulatory and not have this damn disease ruin then rest of life.

Jon

[JonM]

I appreciate your arguement, but truthfully I think I'm making the right decision. I truely believe I am progressive rather than RR and you know as well as I that there are no DMDs for progressive.

The MS thing is estimated guesses and Yes it does pay to be conservative and to take the DMDs. I would absolutely take them if I believed I was RR.

You know that statisically older onset (me), male (me) and first symptoms are motor (me) have a tendency to be progressive or go to progressive quicker.  

I don't think that I'm too far out there taking this position,
Jon

[sllowe]

Hey,

Nice to see you.  I've been off of it a couple times now one reason including low WBC and have to say you are very right.  Though we need it, the time off does shed a lot of light on exactly how much we tolerate while on it. Not everyone obviously, but some, including me.  Had I not went without it I'd have chalked all of it up to the disease.

I'll be honest here, I dilly dallied returning to full dose partly for the temptation you speak of - MS symptoms aside, I simply 'felt' I felt better without it (and w/the lower dose even).  It is risky, like you say, making that choice.  Do we think of the here and now, or the future? You know, like buying something now when you don't have the extra money, instead saving it or putting it away for later golden yrs. Ok, that's probably not the best example, but think you know what I mean. Daily living, vs long term results.

Ok, back to you here. Question for you, are you welcoming the progression so it doesn't "show up" and surprise you? Or, knock you down when you least expect it?  I know you are feeling it gradually, but maybe, like you say, the med has been protecting you and keeping things milder.

You know I'd not hollar at or scold you for your decisions my friend, just giving it to you straight like I know you would me.  When you are ready, maybe we can talk rebif, and sub-q and smaller dosing and compromises.  

ttys,
shell