RRMS to SPMS
 

I am positive I have asked this many times before but forgot, and I'd rather have this answered by people who have experienced it than docs, so please, tell me, how does one know when one goes from RRMS to SPMS?

The question that even neuros are not sure about the answer to :rolleyes:

There seems to be a very fine line between RR and SP and can be difficult to know when that transition actually happens. Last year I asked my neuro if I had transitioned to SP, his answer...possibly, maybe but maybe not:rolleyes: I guess you could call that being noncommittal :eek::)

My neuro thought possible SP because my last exacerbation was in 2002 yet and have had this disease a long time. However, after 28 years I have only had 5 exacerbations so they do tend to be quite spaced. I have been considered stable for several years, my MRI showed improvement and I am still able to improve and maintain my mobility. Mobility has always been my main problem with this disease.

I see my neuro next month for my yearly check and I will be curious to know if he still considers me "possible" SP or what :rolleyes:

I guess all of this to say "I don't know." ;) Talk to your neuro and see what he thinks.

Snoopy, my neuro said the same. :rolleyes: I do think I'm SPMS now. He still has RRMS listed on my records.

I don't think there's a specific thing they look for when changing your diagnosis. I think it's just an overall decline.

Mine told me that insurance doesn't cover much for SPMS so if you're wanting to try new meds usually your neuro would have to list your condition as RRMS.

Usually when you stop having regular defined exacerbations.
I have been in that situation since right before I started LDN,
in 2002. I would have given credit for the stop in
exacerbations to LDN, otherwise.:)

It doesn't mean that you will no longer have some flares,
due to accident, illness,infections..or other known triggers.
Just no more BiG ones.

I haven't had an exacerbation or needed steroids since I have been on ABC-Rs. I am in a study because I am a "responder" to treatment.

I am thinking that these drugs that reduce or stop exacerbations have changed how neuros label us.

Am I still RR but w no exacerbations or am I SP? My fiancee thinks I am progressing slowly.:(

ANN

Yeah, insurance companies do not like to pay for the DMDs when someone has SP.

I don't know what my neuro put down in my file, RR or SP and for me it doesn't matter. He already know, has known for years, I have no desire to use a DMD.

thanks...I'm still confused about this subject. Like I said,I've never really had a major event except my legs locking that got me the dx. Most of the things I experience never go away now...like the spasticity. I have spasms in my calves almost all day and they occasionally wake me during the night. This has gotten worse over time.
My bladder is doing a bit better due to meds...so I'm sure if I didn't take the med it would seem worse than before. Bowel problems have increased the last 8 months, with increased incidences of accidents and inability to hold "noises" in;) Occasional double vision has increased, but it doesn't last long. And of course the cog fog seems to be worse, but that could be senior moments added in:)

This has to be one of the most confounding conditions for doctors to deal with; so many individual symptoms, no way of predicting what will happen in the future, and no cure. But I feel sorrier for all of us who don't know what each day will bring when we awaken each morning:(

Debbie, you sound a bit like me.
I am 55 and starting menopause (yeah I'm kinda late with that) so I'm not sure if my cognitive issues are my age and issues with menopause.
I'm also battling bladder issues a lot.
My spasticity does not come and go.....it just comes and stays.

I get a weird "off balance" in my head that is present more times than not.
However; I am labeled RRMS due to the fact that I have not had "newer or different" symptoms pop up.

BLAH

That's the confusing part, Karilann...I don't get those huge flare ups...just things that appear once in a while, then more often until they're permanent.
For instance, my trips to neuros began with a numb toe. Now all toes are numb, and I've had a couple of instances of the whole bottom of both feet feeling the same the last few weeks. My fingertips are now all numb too-that was a gradual thing that has become permanent. I have noticed the last couple of months an inability to open lids, pull off those safety seals on condiment bottles, things like that. I have to concentrate when holding things in my hands so I don't lose my grip.
warning---TMI ahead...
the bowel stuff has gone on off and on, but has become more frequent. My pcp gave me suppositories to 'install' for bleeding hemorrhoids, but they won't stay in because the sphincter muscle isn't strong enough, so I have to hold it in until it melts. Ugh...and every time I move, I toot...which reminds me so much of MIL with Alz...but I can't help it. It's so embarrassing.
When I tell my neuro about these things he tells me about patients who are worse off. Sorry for them, but what about what is going on with my sxs? Am I getting worse or not? Why don't these things go away???
I guess I have to become a bit confrontational with him next appt...I want answers.