[kicker]

I do feel better in that my neurologist knows there is no med he can offer me, the years on Rebif - I really did feel lousy, no more hours in a MRI (like why, we know I have PPMS. Duh)

My neuro prescribes on a need to basis. I take some anti-pee med (Desicare), some puppy-upper (Amantadine) to go from dead to half dead . AnAntibiotic to ward off UTIs and now we're done. Sometimes I take one Vicodin for Neuropthic pain but really to help me sleep.

I refuse to try anything that doesn't help, waste time shooting the tube,or feel lousier than Age and MS can make me.

[SallyC]

Right, Kicker. I'm SPMS and refuse any meds that don't make me feel better and/or cure me.

I'm thru being a guinee pig, although I kiss the feet of those who are.

[nancymarie]

Hi

My husband who is 61 has PPMS dx in 2000, with symptoms since 1995. It started out with tingling in his big toe which gradually progressed to a limp in his right leg. He progressed very slowly and only went in a wc this year after 14 years since the tingling started. His arms and hands are unaffected and he can still stand for short periods and transfer alone. He self-caths due to urine retention and to prevent utis.

I know that even PPMS is variable and outcomes can range but I worry alot about how this is all going to end.

Does anybody know of anyone with PPMS who had it for years and years and didn't end up bedridden?

My husband doesn't think about the future and I guess he's smart. But I worry alot.

thanks for any responses.

N

[SallyC]

Welcome Nancy, nice to meet you. So sorry about DH's DX. It's hard to be the DW and caregiver and to watch your spouse progress with this dam disease.

Your DH is right though, worrying about the future is not productive and the stress can only make the disease worse. One day at a time. Has he applied for SSDI yet?

Is he on any MS meds? How are they working?
I'm SPMS and on LDN (Low Dose naltrexone). The MS meds don't seem to work for anyone who is not RRMS and don't often work for even them. I always recommend for all of us to try LDN. It can't hurt, unnless you you're allergic and could help in so many ways.

I'm glad you found us stay with us and best wishes for you both.

[agate]

Hi nancymarie, and WELCOME!

I don't have PPMS but have SPMS. I've been reading posts on MS boards for years now and am sure I've seen some by people with PPMS who have had it for years. I'm sorry I can't recall any more details.

I agree with Sally and your husband though. It's probably better to take things one day at a time and not worry too much about what the future might hold.

[nancymarie]

Hi Sally and Agate:

Sally my H does not take LDN - he refused because he didn't think it would really help. He just takes a small amount of baclofen for spasticity and some tylenol for pain. His biggest issue so far has been the burning pain he has in his feet.

Agate thanks for your post. I know some people progress quickly with PPMS and end up quads while others fare better. I just hope that since H has progressed very slowly since dx that he will be old by the time he reaches the end and not have to deal with anything bad for too long. In the meantime we can hope and pray for a treatment that stops progression.

hugs

M

[kicker]

Nancy
I am PPMS, DXed in 2002. NOW, I can look back and see beginnings in 92. I have no tingling, was dizzy and then foot started dragging. I'd read MS was devastating and thought "not for me". But I went from Canadian Crutches to walker to chair. My left arm and leg are useless but cognitively I'm pretty good. Some Short Term memory loss but I am 55 and wonder "Is it age or MS?" MS hits everyone so different. There are no drugs that helped me, my Neuro and I have an unspoken agreement of "hey we tried" See you next year he says, here's my e-mail address if anything occurs." I do what I can, get full disability to add to family money pot. I do my best. No one knows the future or what will happen. A bus could hit us or a stroke tomorrow. An aneurysm killed my cousin's husband and also my female neighbor suddenly. Neither was past 37. Anyone. Maybe my life is better than others who have nothing wrong. Who knows.

[Aarcyn]

hey NM. MS does not really have an "end" that I am aware of.

I am PPMS.

I was dx'ed in 2005 and still walking, albeit very slow and I use a walker about 95% of the time. I quickly got a wheelchair that pulls apart into 5 easy pieces that fit into the trunk. It takes DH or DD about 1 minute to take apart or put together so that outings are more manageable. I got it before it was really needed and despite a desire to stay home, I am glad I have it so that DH and DD can entice me to go places.

I started with feet issues, probably 10 years before dx. They still burn or become icy cold. No prescription meds really seem to work very well. LDN did not work for me.

I do not take much meds at this time. Too little results so a waste of money, IMHO.

I had a couple of really bad days but yesterday was an okay day. Never symptom free, just more tolerable.

I don't really look into the future of where I will be in one year because it is a total unknown. All I know for sure is that MS does not kill, it just makes life different, mostly not what I planned to be doing.

61 and WC, not bad at all from my point of view of MS. If he ends up in bed more than outside, get a good media system. Buy a few plants for the room he uses the most. Cook new weird recipes in an attempt to become a chef.

I can't control the bad, I can control the good.

[SallyC]

Great post, Cyn..

[kicker]

Cyn is great. Listen to her. I do and I'm a cranky old lady (though she is older than me 8-D)