My PPMS - Checking back 3 yrs. later.

[Windwalker]

Later today I go to have some MRI's taken...Brain and Cervical Spine (Neck area). My Neurologist will look at these for a January appointment.

It has been 3 years since my last MRI's and since my Dx. I have progressed so rapidly downhill in those 3 years. It makes me wonder what they will show. Compared to the one's 3 years ago, how badly have things progressed. Do I even want to know? What if one of those horrible injectable Med's. are recommended...would I even take them? What if he tells me what he told me last time, that it is not treatable. Am I relieved? How twisted is that?

Right now I have myself thinking that stablizing right here would not be so bad, and I can even improve my mobility.

I have no idea what I'm going to hear but know I wont like it. I don't want what little bubble I have to burst.

[jazzgirl]

You haven't been on any therapy yet? Did you get a 2nd opinion on your diagnosis?

[Windwalker]

You haven't been on any therapy yet? Did you get a 2nd opinion on your diagnosis?

I'm not playing the "'Gee, what do I have, maybe it's not MS' game". I could diagnose what I have myself. I chose not to take Avonex because I did not want to take something that made me feel worse, call it common sense. I understand that in the world of MS, not much makes sense.

[Grace]

I agree with Jazzgirl hopefully you had a second opinion - if not you should seek one out! I didn't like the doc who did mine but I am glad I had one...

I was diagnosed as PPMS and my neuro put me on Copaxone. I am happy to say as best I can tell I have remained stable so I am glad I chose to do the injections.

I have a friend who is in the PPMS trial for Gilenya and is doing quite well with it so hang in there as there are things on the horizon.

I hope you get good news from your doctor!

[Windwalker]

I've had 3 opinions. At some point if it walks like a duck and quacks like a duck, has orange webbed feet and a bill...we have to call it a duck.

Appreciate the feedback on the Med's. as you may be able to tell I'm a little resistant to using them. I really don't expect to hear them suggested.

[Red7172]

kphirsh I completly understand what you are saying and going through.
I can only state my exprience so here goes...
I was dx back in 93 ( no meds arounds so I didn't take any)
I kept going and going and going then I think I hit the progressive stage in 06. I started copaxone and I did so not thinking it was gonna help or anything. I ended up starting getting lazy with my shots. I would skip time and not feel any different so I just kind of stop doing them. I just kept going down hill so why bother then for some reason I started them again. I am still going down hill but once I hit 3 months of doing my shots regularly again I must say I feel better then I have for about a year. I do not know if the copaxone is helping or not but I will take . (I really don't like taking any meds --so I try not to take them)

Honestly I am really scared on doing my next MRI for the exact reasons you are stating.

[Windwalker]

Thanks Red7172,

I think what may make me a little different than a lot of others in regards to the Med's. is that I started out "Progressive". I've never had Relapsing MS. I was Dx at 46, first symptoms not until 40 and they were only evident under significant physical exertion.

I've read the literature, these Meds are not for Progressive MS. The Advertising comes right out and states this in most cases. I would like to hear from people who, like me, never had Relapsing MS. Who were struck later in life,
> Age 40 and have PPMS.

[Kippy]

Old person

Hi.

I was diagnosed at 59 with "chronic progressive MS" in Dec. of 2007. I think that's the old way of saying "PPMS". My neurologist, an MS specialist, says that I have SPMS due to a bout of vertigo 8 years ago, and said that the interferons wouldn't work on me, so I've never been on any.

I take only drugs for symptoms....Lyrica, Amitriptyline, Ampyra. The neuropathy in my feet is pretty bad, and I've been going downhill, but am still walking.....slowly and unbalanced, but walking.

The doctor also said that he didn't think I could "handle" a DMD. I've had infusions of steroids that I thought slowed the progression, but a person can have only a few of those, so I've stopped getting them.

I exercise at home, take an aquatics exercise class for people with mobility issues, and try to get out every day.

I believe the ads for the meds when they say they're for RRMS. Why else would they state that if it weren't for real?

[KoKo]

Hello

Here is a short article from the National MS Society on how PPMS is treated:

http://www.nationalmssociety.org/abo...ted/index.aspx

In my case, regarding the use/non-use of DMD's, this makes sense because I've never had inflammatory type lesions (or relapses either). So far they have been the degenerative type lesions (steady progression, some plateaus along the way).

Take care,
KoKo

[Windwalker]

Thanks everyone.

At least this time I am going into the Nuero. appt. with a lot of information and questions. Mainly thanks to what I have learned on these message boards.

My treatment since Dx has been to ignore and deny. We all have the freedom as human beings with free will to not do anything for ourselves.

Can no longer do that.

[barba]

late in life ppms

Hello kphirsh-you asked to speak to one dx late in life with ppms so here I am. Dx after a 2 yr search around age 59 (am now 66)-also symptoms after intense exercise. Have never had a relapse and have tried every and any treatment in an effort to stabilize the downhill slide. Even some of the investigational treatments .Am now back on IVIG and take Baclafen and Frampridine (now Ampyra). Cannot say for sure (after all, who knows where I'd be if I did nothing) but have a sneaking suspicion none of it has made any difference. Took a fall and broke a hip 4 months ago and that was a set back but I think the hip is fine now and the disability is all MS related. Use a cane full time and probably working towards a walker. Do a water exercise program and am seeing a PT for gait work. How about you? Do you take supplements and do you feel they are helpful?

[Windwalker]

Hello kphirsh-you asked to speak to one dx late in life with ppms so here I am. Dx after a 2 yr search around age 59 (am now 66)-also symptoms after intense exercise.

Use a cane full time and probably working towards a walker. Do a water exercise program and am seeing a PT for gait work. How about you? Do you take supplements and do you feel they are helpful?

Hi Barba,

That seems very old for an initial Dx. Were you told that was unusual?

I went from cane to power chair very quickly (@ 49). I was still trying to work and not doing a thing concerning the illness. Three years after Dx and only 8 months after "retirement" I am finally facing this thing.

I take the fish oil, B12, B6 and Vitamin D supplements.
I'm on a Saturated Fat free, Dairy free...,everything free it seems, diet. It's too early to pronounce any benefits.

I seem to be leveled off where I'm at for now. I have never taken any DMD's, tried one shot of Avonex. I'm worried about getting worse. I can barely manage the basics now.
Oddly enough, overall I feel pretty good most of the time but the physical systems are a killer.

[KoKo]

Hi

barba:

Hello kphirsh-you asked to speak to one dx late in life with ppms so here I am. Dx after a 2 yr search around age 59 (am now 66)-also symptoms after intense exercise

kphirsh:

That seems very old for an initial Dx. Were you told that was unusual?

I don't think being diagnosed with PPMS when a person is in their 50's is unusual. It is typical for PPMS to be diagnosed after 40.

As we all know, the word typical is used loosely when applied to MS anyways.

Take care,
KoKo

[barba]

elderly ppms

Hi Kphirsh and Koko-yep, MD did tell me I was on the "outside" of the usual age range for Dx and I notice almost all clinical trials don't include those of my age range. I try to be grateful I did not get this at a young age and keep a sunny spot for what I can do. My MS is all in my legs-no eyes, arms, or cognition (I think). Have done some pretty intense PT the last 3 months and am a lot stronger and he is trying to help me really concentrate on the movements for a good gait. It's a lot of thinking and I can walk better but only if I really concentrate and am still verrrrry slow. Am hoping I can speed up but.... Have you found anything that helps gait?

[BarbLee]

Lihirsh--Meds for SPMS

I'm 68. Dx 10 yrs ago. No r/r. Been through all the injectables. Now on Low dose naverone (LDN) an oral
pill once a day. Seems good. I also rely on provigil
for some relief of fatigue. There are drugs for leg pain,
and other symtoms, including depression. Most neurologists rarely see MS patients so please be sure your Dr. is a specialist in MS