Progressive....darn

[Mike_Shuswap]

So, I went to my yearly Neuro appt at the MS clinic. He figures my MS has slowly progressed. That's kind of what I've felt all along, so no real surprise there.

The good news is I no longer have to inject Rebif! I always felt like I was at least doing something to try and combat the effects of MS by taking Rebif, so I have mixed feelings about stopping this treatment.

I'm to continue with the Gabapentin and Detrol LA to deal with some of the symptoms. I didn't like the way I felt on Modafinil, so he rx'd Amantidine for me to try for fatigue.

He's scheduling an MRI for next summer and when I see him next the fall we'll decide what treatments to try.

Mike

[doublevision1]

Another type of MS, albeit the rarest, is progressive relapsing. DMD's may be helpful for this type.

[kwarendorf]

Hi Mike -

I think it is very important that you get straight answers to straight questions. If you ask the doc "Has my MS progressed to SPMS?" you should get a straight answer. It's going to be hard to choose the right path if you don't know the true nature of your MS.

As Debbie said, if you have PPMS then DMDs would seem counterproductive. If you have SPMS there are options available to you.

Kyle

[fortywhat2]

Hi Mike,
Let me introduce myself, my name I Debbie I was diagnosed with PPMS in 2008.  I live in MA and am treated at one of Boston's top hospitals.  It was explained to me by my Doctor that DMD's are not beneficial for PPMS she has just finished running a study that showed no difference in progression in the people who didn't receive DMD's as to those who had received it.

That being said... She also said why would you want to stick yourself with something that isn't going to make any difference in the long run... I agree with her.  Understand that I have never had RRMS therefore I never have so called flairs.  I have a continuous slow progression.  I have no idea if DMD's are beneficial to SPMS which from what I understand is the next stage after RRMS.

I am not a Doctor so this post is merely my opinion. I feel this decision is solely a decision each person has to make for them self.
I'm glad to hear you are feeling better and wish you luck with whichever road you choose to travel.

Debbie
~live as if all your dreams came true~

[Mike_Shuswap]

Hi folks,

As far as stopping the DMD my Neuro said that he doesn't believe it's helping me any and why continue poking myself for nothing. No other DMD's were discussed, although he said there are many other treatments we could look into next year. For now he wants to just monitor my symptoms. Now that I've been off the injections for over a week I actually feel a little better, no night fevers or sweats, and I feel a little more rested in the morning. Maybe these improvements are all in my head, but I'll take it. I didn't even realise I was still having side effects to the DMD.

I think the word he used was "progressing", not "progressive". He called it something like "the dreaded 'P' word".  It didn't dawn on me at the time that there may be a difference. Thanks for pointing this out, Immisceo, I'll see what his report says in about 3 weeks.

We've never talked about my EDSS score. During his exam of me he found my coordination to be worse than a year ago, although my strength has not decreased. All the symptoms on my left side have increased, with muscle tightness/cramping in my foot, hamstring and the back of my upper arm. I told him of my struggles with fatigue, inability to walk as far as last year, increase in frequency of headaches, numbness, etc., etc..

I'll likely give my MS nurse a call once I've seen my Neuro report if I still have any questions about where I stand. Good suggestion Laura.:)

Candy, I wish you the best of luck with Avonex. I hope the side effects are minimal. I'm not giving in to MS, but I am OK with taking a breather and sorting things out for awhile. I'm not usually the type to just sit back and see what happens, but for some reason I'm fine for now with temporarily postponing  my next course of action.

Thanks to everyone for your concerns. I wish I had been able to think of all the points you've brought up during my appointment! He gave me and my wife all the time we wanted to ask questions, we just didn't ask enough.

Be well my friends!

Mike

[Jifr]

Hi Mike. I'd like to know about the course of your ms that made the Dr change your diagnosis. You can pm me if you'd prefer. Thanks!

[rendean]

Hi Mike,
Late to the discusion but I wanted to add my thoughts. I am truly sorry about your MS progressing! I agree with many of those posted before me. Why sit and do nothing to stop your disease?

If it's, SPMS, Tysbari is considered a viable treatment for this. It is in phase II or III studies ( I forget which) but it is why I am on Tysabri.

There are many other treatments as Kyle, doublevision and others pointed out. Please try to confirm what your doc meant by progressing and see what treatment are available. Remembe we are here to help!!!

Hugs!!!
Ren