Not dx'd...but a couple questions, pls...

[gazdajl]

Hi, all. Even though I am undiagnosed, I wanted to ask those of you with PPMS...do your symptoms kind of come in 'waves'?

That may not make sense...but for the past six months, I first had the heavy legs with extreme fatigue...that lasted about 2-3 months. Then, I have had the spasticity in my legs, for over a month. Now, that seems to be ebbing, and I am having real problems with balance (even more than usual).

There has been no time, over the last six months, without some sort of symptom (there have also been more minor, subtle sx's), and they seem to be happening in waves, for me. Maybe this is all just one flare, or something. I was just wondering if this 'mode' of sx's, fits at all with PPMS (or possibly SPMS). BTW...I am almost 55 years old...another reason I was wondering about these symptoms.

Thanks to whomever responds...much appreciated! Love and Light, all. Jan

[misslux]

For me, no, it is pretty constant with some better days where I might have a tiny bit more energy or feel a little stronger -- relatively speaking. Otherwise it has been a decline with some periods of plateau.

[Zuzus11z]

It's been slow for me - really slow. And that kinda freaks me out - especially when I feel or sense something internally being not quite right. I do my best not to stress and continue living my life with MS in the sidecar...rather than driving.

[misslux]

Zuzus, I know it must be like waiting for the other shoe to drop, but slow is good when it comes to PPMS.

Definitely keep living your life to its fullest.

[JerryD]

If you are still undiagnosed, what makes you think you are PPMS? If it turns out that PPMS is the correct diagnosis, I hope that it progresses 'glacially' slow. PPMS doesn't remit. It is a difficult 'pill' to swallow.
My PPMS has been slowly taking away my abilities and faculties. And since there are no FDA approved treatments, all PPMSers are left to their own devices to find treatment. I wish you good luck

[Zuzus11z]

Zuzus, I know it must be like waiting for the other shoe to drop, but slow is good when it comes to PPMS.

Definitely keep living your life to its fullest.

Thanks misslux - will do...and willingly slow....l.......y

[jjs]

I hope there are more responses because I wonder the same about myself. It's been about 3 years now and I just keep getting worse and worse. Yes, some days are 'better' than others but it never stops and only gets worse. A brother commented the other day that he always knows when I'm coming up or down the stairs because I walk VERY heavy ... you'd never guess I was a really small person based on hearing alone.

This made me realize that I am so much worse this year than I was last year. I walk heavy because first, it takes so much effort to use stairs, I'm not so coordinated any more, and my legs don't work right.

And that's just one issue.

I have set and cancelled many appointments but plan to keep the next one in April. I'll post a separate post to this board with my own questions in a little while.

[misslux]

jjs, I went back and read your very first thread in 2011. I have everything you described. I truly hope you get answers soon and very much hope it is NOT PPMS.

[jjs]

jjs, I went back and read your very first thread in 2011. I have everything you described. I truly hope you get answers soon and very much hope it is NOT PPMS.

It is what it is ... and it's certainly much worse now than what I shared in my first thread! I thought I found some sort of hope with a special diet but really I think I was experiencing either a placebo effect (that certainly did not last long!) or just felt a little 'better' because of a consistent break in the heat after another hot summer. After looking back objectively it's easy to tell that I am much worse this winter than I was last winter, and winters are usually my 'best' times.

Anyway, I do hope I get answers as well ... but I certainly wont get them if I keep cancelling my appointments!! So I am going to go at the end of April, Lord willing, and maybe I'll have more news then.

I'm going to start my own thread now. Thanks for your response.