58 yrs. old, MS 20 yrs.-SPMS somewhere in there -take Elavil, Zanaflex, Ditropan sometimes, just got blood taken for Devics Disease NMO - haha - after 20 yrs. may have dx for wrong disease. They didn't even know how to get it to Mayo Clinic. What a bunch of carp.

Another SPMS person here and I just turned 65 this past Friday. Dx in 1990 with RRMS but think I've had "IT" since 1976 when I developed optic neuritis after my third child was born. Remission until '90. Been taking LDN for over three years after bad reactions to the injectables. The neuro says I seem to be stable, but deal with LOTS of pain. Meds: LDN, Zoloft, Oxybutynin, Omeprazole, Aleve, Atenolol for mitral valve prolapse, Warfarin for atril fibrillation, iron, Diazapam for spasms, generic Tegretol when nerve pain is extra bad and dexamethasone pills for any type of flare since a needle will no longer stay in my veins. Hope that answers your questions. I do use a powerchair or scooter all the time but still live alone with some help.

i have thought about this a lot and of course i can't remember the order they go I know I am not the first stage and the remitting, mine sure don't seem to go away and ease up, and my relapse for last few yrs, has always left its mark, except my last attack the one on my right side, although my spasicicty(sp)? in that arm did increase and spasm's too, so who's to say those are not from that last relapse, that was also a first attack on my right side, my attacks are always on my left side, see my dilemma, sometimes I call it denial or what ever you will, but i don't care what kind I got it I try to adapt to it and i try to work with it,

having RRms i do not think I have and my doc has even hesitated to to agree with RRMs there's no remitting

After my last TM attack, I didn't recover well. I was left with a lot of damage, and although I was still having relapses, they thought I had headed into Secondary Progressive. I had MS for 14 yrs at that point, although perhaps as many as 26 yrs including (if I include symptoms before dx).

The beginning of SPMS can include relapses, but they usually stop occurring after a while. As I understand, the important factor is if you do not improve much after relapsing (in the beginning of this stage), and then gradual worsening without relapses (after a short while in this category).

RRMS:


SPMS:


http://www.mult-sclerosis.org/whatisms.html

After being on LDN for 9 months, and dropping one EDSS point, they decided to keep my classification at RRMS. I think that was correct, in retrospect.

Cherie

i was dx'd rrms 5 yrs ago at the age of 53.
the beginning of this yr my neuro said spms. i havn't had a flare but have had slow steady decline, mostly of mobility.

i'm on a lot of meds and have severe muscle pain.
my crab is copaxone and it seems to be holding me steady.

Sheesh, Nancy....did you have any sX of MS before, 5 yrs ago. Mercy, talk about a late DX..

(((((((Judy)))))))...Except for your awful pain and your meds, you are telling the story of my life, again..

By the time I had dx my Neuro said he believes I've entered SPMS, that was 5 years ago. I'm 31, I notice a definite slow decline year to year. I just pray it stays slow! Oh, I've been on 44mcg Rebif.

I am 57 years old. I had to retire permanently in 1993. I had obvious RRMS in early 1992, 4 months after failed back surgery, and in Jan. 1993 it became SPMS.

I think I have had MS much longer because of different mysterious problems I had when I was younger that just went away.

I take Valium for dizziness, Flexeril for muscle spasms, Gabapentin for nerve pain, Lortab for pain, Lexapro for depression, Rythmol for heart arythmias, have a pacemaker and take Temazepam for sleep.

I have never been on a DMD until 2007 and was on Avonex for 11 months but was taken off because of nerve and muscle damage in my thighs at the injection site of both thighs. It was either caused by Avonex and Zocor combined or Zocor alone. My Neuro and Cardiologist think it was just the Zocor but are not positive. My Neuro is not putting me back on any DMD's.

I am noticing my cognitive functions are slowly getting worse and my Neuro has noticed my that I am more unsteady over the last year. My fatigue has turned to exhaustion and my sleeping patterns is terrible mainly because of pain.

I tested high positive for rheumatiod arthritis last month and will find out next month what the next step is for that problem. I am hoping that it is a false positive from the muscle and nerve damage to my thighs. My Neuro doesn't think it is so I guess I will see a Rheumatologist next.

Sally -- I haven't been here for awhile and wanted to thank you for the (((((( ))))))!!!! The same back to ya!

Becky -- Is that your little pom?? So cute!!! Looks like a little ball of fuzz!

As others have mentioned, the SPMS seems to be diagnosed when we no longer have BIG relapses but a slow (hopefully) and steady worsening of symptoms. Right now mine seems to be fatigue! Seems like all I do is sleep and eat.....whenever I try to do something else like read, watch tv, etc., I fall asleep. What a nuisance!!!!!