[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)

[nancymarie]

Thanks for that post Cyn!

[legzzalot]

Well, it's official. She wrote PPMS on my disability letter. (neuro). Go Tuesday to sign contract with lawyer and wait on a court date from there. I am finally in the last stretch of this stupid disability thing. It seems I have been repeatedly denied based solely on my age.

Like I had a choice of PPMS hitting me like a Mack Truck at the age of 27 and making me incapable of returning to work by the age of 29! I mean how dare I not choose to wait until I was over 55! What the heck was I thinking??

What can I say? This disease has made me bitter at the age of 30. My shrink says I use sarcasam as a coping mechanism.... yes, she really does charge my insurance $100 an hour to come up with that conclusion.

I can see the finish line but I can't quite reach it. I know it is coming.

[DVORA]

Originally Posted by 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

we all hope and pray -- amen and every morning you mist remind yourself --- you can both do this --
-
i am 65 -- not in a chair or brdridden -- and have had spms since 2004 ---
take care of you - --- dvora