Multiple Sclerosis (MS) Support Group

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/ Multiple Sclerosis (MS) Support Group

What stage MS R U ? What Determined it ?

mommies4
mommies4
Hi Again , Hope all is well today !

I was Interested in what stage of MS you are in ?

Is this the stage you were Dx'ed with ?

If NOT What changed ? To move that DX ?

Just wondering at your stage what your going through Maybe how you have managed and perhaps help others that have not been there yet ?

Wondering how long it was before you went from one stage to another 6mths, maybe 2yrs , knowing we are all different...

How maybe just one answer here might help another .
After all it's the one's who live this life that are our best teachers !

Best to ALL ANGIE
mteverest
mteverest
Very early stage for me, dxd last year and on Copaxone for a month. Never had a major attack but do have symptoms like fatigue, numbness,tingling..
lchoppel
lchoppel
I have been diagnosed with RRMS for four years now. I often think that I've gone to SPMS but my doctor doesn't think so. It is said that MS patients will enter SPMS within 10 years of their original dx, but I know others here on DS who have progressed faster than that. Yes, we are all different!
marilyn4342
marilyn4342
I was diagnosed over 25 years ago. I was Relapsing Remitting. That lasted for 15-20 years. After going from Betaseron, Avonex and then Rebif. I progressed to SPMS. I only take Ampyra to aid in walking, no more CRAB drugs.

It has been a slower decline than other people's progression.
Hope this answers your questions.
Kayce1970
Kayce1970
I had first symptoms at age 14
had a doc who did not believe me so I was not dx until age 40
at first it was RRMS
but it was then determined that it was at
SPMS going by symptoms I was there for 8 yr before dx
So I was never treated
Now I get mitozantrone (chemo) it has stop the frequent attacks I was having a new attack every 1-2 months so that has stopped
but I was not dx until I was paralyzed
so my advice if you know something is wrong DEMAND to see a nuero
AIMLESS
AIMLESS
When last I'd asked my doc, I was RRMS. That was about 5 years ago, however I was diagnosed in 1/1987!

Yes, I've gone down hill since that date, but have decided not to ask my doctor anymore. How will knowing help me? I know what I can and can not do.

I am doing pretty well on Tysabri.... which I've been on for 2 and a half years now. And treat the walking issue with Ampyra (10 mg twice a day).

Be well!! Amy
mommies4
mommies4
It's all been SO frustrating !
Seems like I can't get them to listen to me and think now I'm slowly getting to move a stone or 2 it's just not enough !

all my sx started 10 yrs ago but I do believe some small things started before that , I just over looked them.

4 yrs ago is when it was clear something has been going on and has been a fight every since to get the help to find the problem.

I've had lots of test and asked lots of questions ,have turned to web sites and forums for Q & A 's , research ect... And just know from what I've learned and what I expirence I'm on the right track !

So I'm now fighting for early treatment knowing HOW important this is ! I also know that where I was 4 yrs ago and where I'm at now has been 2 x as hard w/ more sx and new one's that are lasting longer and coming sooner ...

Worst of all the last 2 yrs there has been no down time between the ( FLARES) if you will ... IT all started slow and is now on a study pace scaring me.I'm finding it harder to live every day life and my what use to be normal is no longer ...

It by no means is a give up kinda of moment thats not possible I still have 2 young boys who need me ! I will possible have answers soon ! I'm currently looking into the diff. medications and whats best for me and my family ...

Thank you all for sharing ! Angie