[kicker]

Being DXed with PPMS, I find my insurance company will not pay for any drugs that say RRMS use. Besides Novantrone (which did not help me) they only allow pain meds. Know of no approved DMD for PPMS. Does anyone?

[ms er since '06]

Every time I see my neuro, I ask her if there is a treatment for me, and she says no. And since all the meds I've taken for symptom management have either not helped or I had bad side effects, I now take nothing. And I have to say I feel much better since I'm off all meds - less weak, less tired, and I have less spasms. Of course I realize this may not last, but for now I feel better. But it's beyond frustrating there is no treatment for PPMS.

[SallyC]

There is really no treatment for anything other than RRMS..

[Judy2]

Yep, time for another rant. Why can't the powers that be find something to help those of us with a "progressive variety"??? It seems hard to imagine after all this time, there still is nothing. My body is saying "ENOUGH" -- now I'm on my fourth course of antibiotics in about three months due to UTI's. I realize they're more prevalent when using a catheter, but it's either that or the Hoover Dam overflowing constantly.

Also my legs are causing more problems lately. Looks like some cellulitis from the extreme swelling due to immobility. I have custom wraps for them, but it happens anyway. Maybe the infection from the UTI has something to do with it?

Then the continuous pain......it never stops. Now with the huge snowstorm on the way, the barometer is falling and every nerve ending is screaming/burning/hurting. Just another day with SPMS -- are we having fun yet???

[SallyC]

Amen Judy, I'm with you all the way.

So sorry for your pain.

[Erika]

This is anything but fun. Sorry that Sx's are ganging up on you Judy.

Some joggers just ran by my house in their parkas and toques. It is -20F and dark outside, yet there they are...all fit as fiddles and ramping it up a notch. Something in me wanted to get up up from my chair, go outside, make a snow ball and throw it at them .

With love, Erika

[SallyC]

Or they all jogged by your house and a pile
of snow from your roof fell on them!!

[msbluis]

I'm new to this PP/SP group. I look forward to meeting you.

We're pretty much in the minority, aren't we? I bet among us though, we cover a bunch of MS symptoms and experiences!

msbluis
(Ms Blue Eyes)
[FONT="Tahoma"][B][SIZE="3"]

[JoanB]

Hi msbluis. I'm PP too. This thread's been pretty quiet for a while, but maybe your post will bring folks out. Anyway, nice to meet you!

[msbluis]

Originally Posted by Judy2

Yep, time for another rant. Why can't the powers that be find something to help those of us with a "progressive variety"??? It seems hard to imagine after all this time, there still is nothing. My body is saying "ENOUGH" -- now I'm on my fourth course of antibiotics in about three months due to UTI's. I realize they're more prevalent when using a catheter, but it's either that or the Hoover Dam overflowing constantly.

Also my legs are causing more problems lately. Looks like some cellulitis from the extreme swelling due to immobility. I have custom wraps for them, but it happens anyway. Maybe the infection from the UTI has something to do with it?

Then the continuous pain......it never stops. Now with the huge snowstorm on the way, the barometer is falling and every nerve ending is screaming/burning/hurting. Just another day with SPMS -- are we having fun yet???

Hi Judy,

Is it ok to call you Judy instead of Judy2? Or maybe JudyToo... sorry, my poor sense of humor. By the way, that's a cute avatar. Is it your baby?

I'm new here, but not new to MS. Your post mentioned a catheter. Is your cath an in-dwelling Foley or do you self-cath? I've been lucky in that I haven't had many UTI's, but I understand what they're like. Not fun. I self-cathed for 2-3 years which made it SO much easier to go to dinner, shopping or a movie without having to scout out the nearest restroom. Since 2010 I've had an SP cath. (suprapubic) It has worked well for me.

For years I, too dealt with grossly swollen toes, feet and ankles. Once I could no longer walk at all due to the MS - about 10-12 years ago, the swelling began. Before that I normally wore a size 9 1/2 women's shoe, but it got so bad that I had to get a men's size 13(!!) house shoe.

A few years ago I began sleeping on my back with a wedge under my lower legs/feet. The swelling went down quite a bit. Then I changed to eating just one healthy meal per day ... a few months later with the resulting loss of weight, the rest of the swelling left. Yippee!

Let me know if I can answer any questions. If you have any MS symptoms with areas below your neck, I may have dealt with them myself over the past PPMS years.

Good luck to you, Judy2. I'll be thinking of you.

Karen
msbluis