[kicker]

A group rate which includes good meals!!! I'm (cough- cough) older with old MS that's put me in a chair, Stopping progression is my only hope at this point (or a miraculous great cure and time travel thing!!)

[Aarcyn]

Kicker - how much has your PP progressed lately? Has the slippery slope leveled off at all?

[kicker]

No big leaps or bounds, but maybe baby-steps of progression only evident right now to me. Holidays aren't helping it now or added needs of family in college search.

[gonnamakeit]

Originally Posted by SallyC

Maybe we can get a group rate.


If this treatment can do this for you PPMSers and SPMSers, I say go for it. All surgery is dangerous, but certainly not moreso and perhaps less than the DMDs offered.

I agree with you. Once I see that patients who undergo the procedure no longer have stents floating around their heart, I would be ready to climb on the operating table.

There really is nothing else out there to help most of us.

gmi

[Judy2]

Hi fellow PP and SPMSr's! Have you with the PP variety tried LDN? I know it's not specifically recommended for it, but with no or little side effects, it just might slow down progression as it's done for me -- and Sally (right?).

Another question -- do any of you have severe bladder problems? I've seen the new med, Tovias(?), and wondered if anyone had experience with it? I've been on oxybutynin forever and it doesn't do the job as well as I'd like. It dries out my mouth just great though! Have an appointment with my pcp this Thursday so thought I'd question him about it.

Are you extra tired/fatigued lately? Maybe it's just the thoughts of getting ready for Christmas that are exhausting me -- changing temps too. Depressed, down and disgusted!!! So many community events happening, shopping, etc., and I'm stuck in the house. Tonight I seem to have an "eye headache" on the left side. Sure hope it isn't an indication of things to come. I HATE THIS DISEASE!!!!

[kicker]

Judy,
I want to try LDN. My neuro poo-poos, but a message board mate has given me a name to contact. I used Oxybutyin - it made my mouth a desert but didn't help make me pee less than Vesicare I once took. So switched myself back to Vesicare. I take Amantadine 2X a day for fatigue, tried Provigil which did not help, but everyone so different in meds and what works for them!!

[kicker]

Look at the number of views and on thread. Comon, make yout voice known. Just say hi.

[Judy2]

Thanks for your thoughts, Kicker!! Yep, this lousy disease has to be so different for everybody that we all have to find what works best for us. And....I didn't go to my doctor Thursday after all. This darn weather with the rain, cold, rain, more rain, etc.....has me so sore and stiff, there was no way I could imagine getting into and out of a car twice besides just getting ready to go! Come on Docs......bring back the housecalls please!!!

Come out wherever you are PP and SPMS people!!!! Most everybody can't be RRMS!! That's just not fair!!!

[kicker]

Judy, I am sleeping more when I can, DH, morning lark that he is, let me sleep tp 7:45 today!! He's up at 5. Sometimes I practice in the mirror saying "your Honor, that's why I had to kill him" 8-). I hope it's the thought of getting ready for Christmas making me tired, not progression. Ide hit a level place but feel more cross-eyed lately, tired and turning in bed 180 degrees is harder. It's like the cotton underwear is Velcro on cotton sheet. Nylon makes it easier. I'll buy a satin fitted sheet to try. I wear Poise pads 24/7 now, so cotton undies really don't matter. I sleep good but need to turn to get pressure off limbs.

[SallyC]

There are probably more PP & SP peeps out here, who are no longer having exacerbations, but It's a hard thing to admit, especially when the Docs are DXing us RRMS, so they can fill us full of their fav DMD.