Flares - non-existent?

[anon07072023]

Hi Everyone, I supposedly have RRMS. I was wondering how many have distinct flares?  I never have had a "flare" per se.  It's like when my symptoms started about 2 yrs ago, they've always been there. Not only are they ever present, it seems like there's a slow progression.

6 months after my symptoms started, I was still having the same symptoms. Then they gave me IV solumedrol for 2 days (stopped a day early due to hyper-sensitivity).  It seemed like the symptoms kind of got better, but within a couple weeks they were back again.

Confused...Thanks,
Kelly  

[anon07072023]

Thanks Shell. I've asked my new neuro before if he thinks that maybe it could be PPMS. I do have problems off and on with walking - to the point of almost considering going to the ER some evenings. And climbing stairs is very difficult.  He seems to think that after 2 yrs of symptoms, I should be in a wheelchair by now if I had PPMS. He said that it presents differently.  

I found this website and it says that 25% of people with PPMS need help walking after 7 yrs. Heck, on some days I already need help now.

http://www.webmd.com/multiple-sclerosis/features/what-to-expect-with-primary-progressive-ms

Thanks,
Kelly

[sllowe]

Hey Kell,

My experience is similar to yours and alot to Jens.

Was hard for me to distinguish between constant symptoms and my new normal.

Due to the fact I do not have increasing lesions, I feel comfortable with the label RRMS. I do not have frequent attacks - especially nothing comparible to my 1st.

My similarity to your comes with not really noticing remissions. We've talked often about how misleading that dx is for those who don't experience this the chronic issues.

You definitely should bring this up to the doctor. Because if there is progression (beyond your new normal and the fluctuations that come with that) you should be evaluated thoroughly to identify if there has been some changes.

-shell

[anon07072023]

What troubles me is that I don't have very many lesions in my brain (it's a slow progression of getting them), and I do have lesions in my spine. It seems like 50% of my "lesions" are T1 black holes. Of course if you read about them, they don't typically come about this fast - or if they do, they're kind of more associated with PPMS.

If you read my neuro's report - he says something like I still have remnants of my 1st onset of symptoms (that's not the word he used - I can't think of it right now).  Which is wrong - It's not remnants of it - it's the same way or worse than when I 1st presented with my first symptoms.  

I just have so much spasticity and now even more weakness in my legs. I guess maybe my ON would be a flare when I get it.

I have an appt with my neuro on 8 April. I'll talk to him about it. I think maybe part of the problem is that it takes so long to get into a neuro in Colo Sprgs. I didn't get in to see my first neuro until about 4 months after my symptoms started. By then maybe he thought I had finished or was on the end of a flair.  So he maybe just thought I had the residual symptoms of it. I don't know...

Thanks,
Kelly

[COBOB]

It seems I have right leg spasticity all the time (expect when I'm on IVSM and for a couple of weeks after.)  The "buzz" in my right foot has been there so long I have pretty much forgotten about it.   I have TN all the time.  I can tell if I forget to take my Tegretol.  

When I get hit with ON, that is a flare for me.  That's when I call the neurologist.  The rest is pretty much continuing paroxysmal symptoms.  I guess if I couldn't use an arm or a leg or my balance was so bad I kept falling down, that would be a flare for me (as a bang my knuckles on the wood desk.)

Bob

[jensequitur]

Hey, Kelly - my experience is that the first two years after diagnosis were basically horrible.  I could never tell when I was in a flare - I would just wake up every day with different symptoms.  It wasn't until I recovered somewhat from the bad flare I had in 2007 that things got better.  I was able to distinguish a flare from my 'new normal.'  

Recently I've noticed that I haven't had a flare in a while, but I still seem to be progressing.  I think I've moved on to SPMS, but I haven't talked to the neuro yet.

Of course, the insurance won't pay for treatment for SPMS, and the jury is still out on whether DMDs help SPMS.  So your neuro won't diagnose you with SPMS unless they're absolutely sure.

So I would talk to your neuro about the lack of flares, and your constant symptoms.