Untreated MS

[rsinger]

Just curious if there are many people who have untreated RRMS. I had my first attack in 2009. Numbness and tingling of lower extremities only upon walking. After several tests one lesion was found at T4. By the time this was found the symptoms had cleared up. Spinal tap was unremarkable as well. Not diagnosed until 2012 when there were 3 new lesions but asymptomatic.

I started copaxone May 2012 for 5 months but had to stop because of elevated liver enzymes. Stayed untreated until Feb. 2013 when I started gilenya but stopped after 3 months due to skin lesion on the face. Since then I had 2 Mri's that were unchanged. Was scheduled to start Tecfidera in Nov. 2013 but had intestinal virus that left me with post infectious IBS. Still waiting for GI symptoms to clear completely before starting Tecfidera.

As you can see I have been essentially untreated with no changes on MRI and asymptomatic.
Would love to hear from others with similar story.

[jkforrest]

DX in 2000 tried Avonex. Beta and then Copaxone. Husband lost job in 2008 no drugs no doc since. Just ride out whatever I think may be a rrms symptom.

Trying to see MS doc when ins goes into effect next month.

[SNOOPY]

Hello rsinger,

Untreated MS?

Are you referring to not using one of the Disease Modifying Therapies?

Then the answer is Yes.

I do not and have never used a DMT.

I was diagnosed in 1985, long before the first DMT came out for the general MS population in 1993. It has been my choice to not use a DMT and I have no intention of changing my mind at this point.

[rsinger]

snoopy

Yes I do mean DMT. What does secondary progressive without progression actually mean? Most of the DMT have about 30% efficacy. Hardly seems worth it. The orals have upwards around 50% efficacy but with more serious side effects. Difficult choices to make. Sometimes I forget I have MS but it is there. The problem is there is no going back once a relapse happens. Although there can be recovery to almost baseline like in my case. Look forward to hearing from you.

[KatieAgain]

I did not go on a DMD when I was first diagnosed. I had only a couple brain lesions. My MRIs were stable with no new lesions and few flares or symptoms.

Once flares started getting really bad and MRIs were no longer stable, I went on DMDs. I had to slow this disease down. Only thing available to me at the time were the CRAB drugs. To me, 30% was better than nothing.

It is a personal choice as to if and when you take a DMD. IMHO, some people do not need to take the drugs. Unfortunately, I do...or I would not be walking today.

You might be one fortunate people that never experience progression.

[SNOOPY]

Hi rsinger,

What does secondary progressive without progression actually mean?

Secondary Progressive MS without Progression is seen in about 10 percent of those with MS. This is seen in both treated and untreated MS patients.

I have not had any clinical evidence of progression in several years, my MRIs have improved, my last exacerbation was in 2002.

The RR is the inflammatory phase of the disease, SP is the neurodegenerative phase of the disease.

[dyin_myelin]

Yes I do mean DMT. What does secondary progressive without progression actually mean? Most of the DMT have about 30% efficacy. Hardly seems worth it. The orals have upwards around 50% efficacy but with more serious side effects. Difficult choices to make. Sometimes I forget I have MS but it is there. The problem is there is no going back once a relapse happens. Although there can be recovery to almost baseline like in my case. Look forward to hearing from you.

There's some articles on this blog about benign MS I've found interesting. http://multiple-sclerosis-research.b...it-benign.html Basically, don't hold your breath, and although more research needs to be done, subtle background damage is still occurring. I don't think I have a benign presentation due to lesion load and motor rather than sensory issues. I'll take this window to treat as aggressively as I can. If I had ON and was ten years older, my answer may be different, but I am aware of benign criteria people who now have 50+ lesions and high disability.

[Thinkimjob]

I was never a fan of that 30% better with these drugs than without.

That's really no better than placebo, I thought, but credit where credit's due, I've had this sucker for 16 years, bad for three, therefore with ten years the usual "okay" period post- diagnosis, the drugs have done what they claimed they would do.

On the other hand, in retrospect, not sure those first five miserable side-effect filled on Beta where a fair exchange. When they say "flu-like" side effects, they really mean it.

Maybe the MS would have progressed faster, maybe not.

Don't bank on your MS staying benign. I did. I had absolutely no trouble at all vis a vis motor skills for 13 years, then bang.

[marti]

I began this journey taking Avonex. Yuck. That lasted 6 months. I then went on Copaxone and stayed with it for several years. Then I started cheating. Then I quit all together.

Now I'm in that mental dilemma of should I or shouldn't I. Sometimes I take a couple shots a week. Other times I go months without. I can't see any difference in the way I feel when I stop, but that's the rub. You won't see any physical changes.

The shots, which are criminally expensive, do NOT treat symptoms or cure anything. It's a gamble we all take in this decision. No one can tell you exactly what to choose.

Good luck with this one. You will get all kinds of advice about the meds. It's tough.

[SNOOPY]

For anyone with this disease it is always important to remember nothing is guaranteed about this disease.

There is no way to know if a person who starts out with only sensory symptoms will do better than someone who starts out with mobility problems.

An assumption is made, but as anyone with this disease knows an individual's MS can change, without warning, leaving the person wondering WTH. You can do everything right (medication, following your neuro's advice, diet, exercise, attitude, ect) and MS can still progress, still cause problems.

I have had mobility problems from the very beginning and the one issue I continually fight. This disease has always affected the spinal cord much more than the brain.

Based on assumptions (on presently symptoms) I should not be walking or in the 10 percent category I have been put in, but I am. My MS has always been termed "mild" but from my perspective I was anything but mild.

Many feel if they did not use a DMT they would probably be worse and maybe they would, maybe they wouldn't, no one really knows.

I feel if I had used a DMT I would be worse.

There is still much unknown about a disease which has been around since at least the 1700's