Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I've already asked one person on here (you know who you are, and thank you!), but I wanted to get the opinion of some others.
I was diagnosed with RRMS in 1991. I have done very well for 16 years, and I'm very grateful for that. My question is, at what point does your neuro decide that you have made the change to SPMS? I have had several exacerbations over the past 6 months, as well as cumulative cognitive problems. My balance is much worse than it use to be, and my gait is unsteady at times. I mentioned this to my husband yesterday, and he said he thought I was at the point of starting to progress a little. I haven't mentioned this to my neuro yet, I see him in a couple of weeks and will discuss it then. Does anyone have a "defining moment", or is it mostly just a gradual thing?
I am really ok with the fact that I may be at this point, MS is just a small fraction of my life, and doesn't have a damn thing to do with who I really am. It's just an annoying problem I have to deal with.
Any responses will be greatly appreciated.
I was diagnosed with RRMS in 1991. I have done very well for 16 years, and I'm very grateful for that. My question is, at what point does your neuro decide that you have made the change to SPMS? I have had several exacerbations over the past 6 months, as well as cumulative cognitive problems. My balance is much worse than it use to be, and my gait is unsteady at times. I mentioned this to my husband yesterday, and he said he thought I was at the point of starting to progress a little. I haven't mentioned this to my neuro yet, I see him in a couple of weeks and will discuss it then. Does anyone have a "defining moment", or is it mostly just a gradual thing?
I am really ok with the fact that I may be at this point, MS is just a small fraction of my life, and doesn't have a damn thing to do with who I really am. It's just an annoying problem I have to deal with.
Any responses will be greatly appreciated.
People with MS Can Expect One of Four Courses of Disease
MS tends to take one of four clinical courses, each of which might be mild, moderate, or severe:
A relapsing-remitting course (RRMS), characterized by partial or total recovery after attacks (also called exacerbations, relapses, or flares). This is the most common form of MS. Approximately 85% of people with MS initially begin with a relapsing-remitting course.
A relapsing-remitting course that later becomes steadily progressive is called secondary-progressive MS (SPMS). Attacks and partial recoveries may continue to occur. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook that these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.
A progressive course from onset without any attacks is called primary-progressive MS (PPMS). The symptoms that occur along the way generally do not remit. Ten percent of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made after the fact-when the person has been living for a period of time with progressive disability but no acute attacks.
A progressive course from the outset, with obvious, acute attacks along the way, is called progressive-relapsing MS (PRMS). This course is quite rare, occurring in only 5% of people with MS.
Since my dx in March 07 (after Optic Neuritis attack in Jan. 07) I've dealt with ongoing issues of leg pain (neuropathy and spasticity), foot pain, skin burning, electric shocks, fatigue, nausea/vomitting, tingling sensations, hand tremors, poor balance, and most recently some pretty unfocused thinking and remembering.
My point is that the symptoms have never let up, regardless of the medications i've tried to fix them.
So yes, I think that progression does happen, probably differently for each person depending on their body, their immune system
(to start with and continuing).
I haven't had another exacerbation (something specifically wrong) but the daily symptoms certainly make me feel that this has progressed.
Two years ago I didn't have any of this happening to me.
I am in another group of MSer's with progressive MS. Here is the description of the group.
Description
MS-Quads is a place that people with advanced Multiple Sclerosis can share their experiences with all aspects of life. Possible topics to discuss include feelings, independence verses autonomy in one's life, assistive devices, personal care attendants, dealing with specific physical problems, relationships, family, accessibility and disability related legislation -- in short, any part of your life that is affected by MS.
Most organizations for people with Multiple Sclerosis seem to focus on people who are newly diagnosed or have relatively mild symptoms. They usually leave me feeling left out, even unwanted. Information they provide on symptom management, medications, drug trials one can't qualify for unless you can walk are useless to people with very advanced multiple sclerosis. People with MS who balance four kids, full time jobs, volunteer work and more are not inspiring. Internet based web sites and forums and lists for the most part display this same bias.
MS-Quads provides an alternative -- a place where people with MS can share their lives, challenges, and know they are among others like themselves who understand.
MS-Quads is open only to people with advanced Multiple Sclerosis, spouses and significant others.
While it is impossible to guarantee confidentiality on the Internet, I would encourage everyone to respect others and not share what is posted here without first asking permission from whoever posted it.
Group address is
http://health.groups.yahoo.com/group/MS-Quads/
many hugs
Morgaine