RRMS or PPMS?
 

Just wondering if there is an obvious way to tell what type of MS I have? My neuro did not say what type it was when I was diagnosed, and when I saw the MS nurse and asked, she said probably RRMS but wasn’t sure.

Some will say it is not really important, but for me it may help with some decisions I have to make (particularly regarding work); because if it is RRMS there is a chance I could stay as I am for years. My first symptoms came on suddenly (mainly my eyes, hands and arms), but with hindsight I have had cognitive/memory problems for years, plus fatigue was building slowly. Since my spinal cord lesion, I was treated with steroids which helped a little but not much, and now it seems like I am getting slowly worse - my balance is getting worse, calves feel tight and painful, upper body getting tighter. I know some of this has to do with fibro and I’m getting to confused which is which.

Any obvious way to differentiate them? I think I’m just freaking out about my 6 month MRI coming up April 27th. I’m so afraid that the C is not working and I have to start all over again.

The type of MS your doctor dx you with matters because some insurance carriers will not approve DMD's for those dx'ed with SPMS or PPMS. Some only approve meds for RRMS.

I'm not sure how long you've been on C but I've read that it takes up to a year to see any recognizable benefits from it. And even that time frame I'm not sure of.

I don't know how you can tell what type you have.....it seems to me like it's a hindsight thing. Looking back over your sx and trying to decipher which ones remit and which ones just continue to get progressively worse. It's hard to tell sometimes.

I'm thinking I probably have progressed to SPMS but I haven't been formally dx'ed with that type yet.

Kitty is right. My 1st neuro said RR but we both suspected PP. But I got to try a DMD for 2 years. Insurance allows stuff for RRs, nothing for PP. He moved. All neuros after that (3 said PP, then 2 moved away and the 1 other wasn't for me.

I go to my 5th in May. Hope he's a keeper.

Wonder if this will help you. Or maybe you know this much already and want further answers. If so, I'm sorry.

Relapsing-remitting MS is defined by inflammatory attacks on myelin (the layers of insulating membranes surrounding nerve fibers in the central nervous system — CNS). During these inflammatory attacks, activated immune cells cause small, localized areas of damage. Progressive forms of MS involve much less of this type of inflammation.
Primary-progressive MS (PPMS) is progressive from onset without any inflammatory attacks. People with RRMS tend to have more brain lesions (also called plaques or scars), containing more inflammatory cells, while people with PPMS tend to have more spinal cord lesions, containing fewer inflammatory cells.
Secondary-progressive MS (SPMS) follows after an initial relapsing-remitting course. Of the 85% of people who are initially diagnosed with RRMS, most will eventually transition to SPMS, in which the disease begins to progress more steadily (although not necessarily more quickly), with or without any relapses (also called attacks or exacerbations). This means that there is less inflammation and more gradual destruction and loss of nerve fibers in SPMS than in RRMS.
Progressive-relapsing MS (RPMS) is a progressive disease course from onset, characterized by gradual destruction and loss of nerve fibers, but with occasional inflammatory attacks as well.
In RRMS, women are affected 2-3 times as often as men; in PPMS, the sex ratio is 1:1.
RRMS is diagnosed earlier than the progressive disease courses.
Most people with RRMS are diagnosed in their 20s and 30s, although it can occur in childhood or later adulthood.
The onset of PPMS tends to be about 10 years later.
Because the relapses that occur in PRMS follow an initial period of disease progression, a person may be diagnosed with PPMS before the PRMS is identified.
The transition to SPMS generally occurs in people who have been living with RRMS for at least 10 years.

I've only been on C six months Kitty. I didn't know it took a year to work or show some improvement. I think I'm just getting anxious over the MRI which I absolutely hate. This is all so new to me and all these abbreviations and letters are overwhelming. Gosh I just learned what DH meant :p

Actually, it's very important to get the correct diagnosis. RRMS and PPMS are very different, and while RRMS has many drugs available to treat it, PPMS currently has none.

RRMS (relapsing remitting multiple sclerosis) is identified by distinct relapses and remissions in disease activity. In other words, there will be periods where the patient's symptoms get dramatically worse, and then some weeks or months later the symptoms will go into remission, and the patient returns to their baseline state, perhaps with some residual effects left over from the relapse.

PPMS (primary progressive multiple sclerosis) patients never, ever experienced a remission. Their symptoms gradually worsen over time, the progression possibly plateauing for a while, but never backtracking as in a remission.

The other posters on this thread are correct, doctors are hesitant to label a patient with PPMS because insurance companies won't pay for treatments not specifically approved for a disease, and there currently aren't any for PPMS.

Many neurologist will try the RRMS drugs on their PPMS patients in hopes of slowing down the disease. It's better than doing nothing...