Relapsing remitting my ***!

[gypcwmn]

I don't understand Relapsing Remitting with which I am diagnosed.

I constantly have something going on everyday.

I always have some art of headache, always fatigued, always pain & burning in my leg

& brain fog very often. I have had continuos symptoms for about the last 2 years.I was diagnosed in 2009.

I never know if I have a relapse because of constant symptoms.

There are times that I feel worse is that a relapse?

It does seem as if I am getting worse. It seems as if I am all remitting & no relapsing.

[Sidesteps]

Are you on dmd's? Reason I ask is I felt pretty miserable for about 3 years. I had to be on Avonex and a couple IVSM treat,emits, for the recurrent flares to slow down, reduce the inflammation and really feel the difference between being relapsing and remitting. I had 8 to 10 flares in 2 1/2 years. I wasn't ever healthy during that time. Now, I feel the different.

[kwarendorf]

I agree with Ess's last point. The only label that really matters is PPMS. PPMS is in a distinct category. The vagaries of RRMS and SPMS are different shades of the same color.

Kyle

[essdipity]

Alex did a great job with MS101. I do disagree with her last point, though. Some people, and Kyle is a good example, receive a diagnosis after RRMS has transitioned to SPMS, but I don't this is true for most people.

It wasn't true for me, because even though I had had symptoms for several years before diagnosis, I also had periods of real remission when I forgot all about whatever was wrong (which I hadn't named in my head). It's been a long while now since MS was permanently etched in my psyche, and I still feel I'm in RRMS. I do have relapses and remissions, even though some stuff never goes away now, which is pretty common. Alex explains this phenomenon well.

Another thing to consider is that if doctors really felt that most MS had become progressive by the time of diagnosis, there would be far fewer prescriptions for the MS drug treatments. Some doctors take this route regardless of type of MS, I know, on the theory that it just might help, and that's good. But I think most are convinced it's RR until strong evidence proves otherwise.

And just as an after-thought here--It's my conclusion, not scientific or verifiable, that the MS categories are in reality more fluid than their names would suggest. Just as symptoms vary and change and are hard to pin down, many other MS 'rules' are simplifications and pigeon holes for the sake of order in talking or writing about it, and are not necessarily valid on an individual case basis.

ess

[kwarendorf]

Alex's explanation is right on the money. I was diagnosed a little over 2 years ago. By then I'd had MS for 20 years. So my initial dx was SPMS.

I have not had a relapse since my diagnosis but do have "symptoms" everyday. If I have them everyday are they really symptoms? Regardless of label, nerve damage caused by MS leaves me with nerve pain in my feet, bladder hesitancy, double vision every morning (which clears quickly).

So, no relapses by MS friends for life :-)

Kyle

[gypcwmn]

Thanks for that wonderful explanation.

I sometimes get to the point where I want to pull my hair out.

A break once in awhile would be nice.

You & others like you on this forum are a source of information

that has been so helpful to me & so many others.

Thank you  p.s hope all went well today

[HVAC]

Okay MS 101. There are two things going on one is inflammation. When the inflammation dies down or goes away so do the MS symptoms. The second is nerve damage. Where you have nerve damage those symptoms are with you for good. So with relapsing remitting you have attacks based on inflammation. If your symptoms stay that is nerve damage. You can have both and still have relapsing remitting MS. The trick is that sometimes inflammation can stay for months or years. Even the doctors can't guess which symptoms are inflammation or nerve damage unless they never go away. A lot of MS damage is gray matter which does not show up on MRIs.

!8% of all MS patients have Primary Progressive MS. In that case you do not have relapses. However your symptoms can get better and worse over time. You do not necessarily have the same symptoms to the same degree all the time.

PPMS patients are usually diagnosed a year after the inititial diagnosis. Neurologists like to follow you for a year.You have fewer  brain lesions may be one or two. You have more spinal lesions. You symptoms are so subltle it is harder to tell you have MS. It picks up speed when you are in your 50's It is also more severe.


I have had PPMS for over 40 years. I had an attack in 1965 and my symptoms were pretty much the same until I was in my 40's. My doctor saw my MS but I did not. It was clear to me I had PPMS so I was not surprised when my Neurologist diagnosed me. I have never had anything I could call an attack besides the one that put me in the hospital when I was an infant in 1965.

I have always had double vison, vertigo, cognitive issues ( could not read in school even though I have 187 I.Q. I was put in the slow class ), headcahes, depression, and weakness on the left side.

Also by the time most people are finally diagnosed with MS they have progressed to SPMS. In this there is more nerve damage.

Alex