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

[sllowe]

Hey Mike,

I'm sorry to hear this. I do agree with what has been said about treatment. There is not a lot of data unfortunately on the disease modifiers in regards to SPMS or PP, however, and we do know that it works best in it's early phases, however, I'm not so sure I'd quit a modifier w/out some evidence of increased lesion load. And, also like Laura says the new meds, perhaps tysabri? What has the doc said about stopping a DMD?

Thinking of you - as I know it's painful to hear out loud what you've already been thinking.
(((hugs))
shell

[PastorDan]

Yeah, Mike.  What they all said.  You'll always find support here, sorry to hear all this, and did we read you right: you're stopping after just one DMD attempt?  If it was my disease they were talking about, I think I'd try everything they'd let me try, and push to try some more.  Just one man's thoughts, FWIW.

God bless.

[kwarendorf]

Hi Mike,

My initial diagnosis was SPMS. Me and my doc have been doing everything we can to keep the wolf at bay. First it was Tysabri. When that stopped working we moved to Rituxan. (I'm getting my second dose as I type.)

To do nothing is to admit defeat. I ain't admittin' nuthin'! :-)

Kyle

[Mike_Shuswap]

Thanks everyone for your comments and concerns!

I'm OK with taking a break from Rebif. In hind site I guess it would have been smarter to continue with the DMD till my next MRI, but when my Neuro suggested stopping Rebif after over three years, I jumped on board.

I have several relatives who have MS and have never taken a DMD, and who's MS sx'x have  progressed very slowly, as mine have so far. I will call my MS nurse the minute I think I may be in relapse. I haven't had an actual relapse in a couple years, just slow continuous increase in symptoms.

I have to admit I'm not sure if he changed my dx, or is still just calling it MS.
He never did specify RR, SP, or PPMS on his reports to my GP, always just MS. I'll get a copy of his latest report next month.

I will educate myself on treatments available for progressive MS over the next couple of months and then decide how I want to proceed, but for now I just want to pretend it isn't there and take a breather.:)

Thanks again friends, I value all your caring thoughts!

Mike

[Guitar_grrrl]

Hi, Mike,

I echo the others re: DMDs.  There are other choices, and I hope your neuro is forward thinking enough to get you on another med, and still "brand" your MS as "RRMS", and not any of the progressive types.

Hang in there, my friend.

[doublevision1]

Mike - when you say you've had no relapses but continued with progression, does this mean your EDSS score changed? I'm just wondering if this was a measurement used to compare past vs present. I've found my neuros to be inconsistent in their reference to EDSS in my follow up reports.