NeuroTalk Support Groups - PPMS and SPMS Support Thread

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - PPMS and SPMS Support Thread (https://www.neurotalk.org/multiple-sclerosis/108560-ppms-spms-support-thread.html)

kicker

05-07-2011 12:29 PM

I'm in a chair, one foot (my bad side) gets all swollen. I need to elevate them.

When I lay down in bed, my feet get colder, not warmer. I think it's blood flow. Anyone else? Sitting up in the chair, they're warmer.

agate

05-07-2011 07:47 PM

Me too, kicker. My feet get so cold in bed that I always wear warm socks at night.

SallyC

05-07-2011 09:27 PM

Quote:

Originally Posted by agate (Post 768531)

Me too, kicker. My feet get so cold in bed that I always wear warm socks at night.

Isn't that funny, I'm just the opposite, my feet get too warm at night and I have to kick the covers off of my feet. Otherwise I roast.:)

nancymarie

05-08-2011 07:04 AM

Thanks for the info.

Doi you think one of those boot shaped leg massager devices would be good?

Thinking of getting one for H.

Aarcyn

05-08-2011 10:02 PM

I think part of my problem is with Baclofen, that it makes my ankles swell. Plus I have some jerk spasms. DH rubs them when I ask. Elevating legs makes me spasm worse.:( Stuck between a rock and a hard place.

DD is becoming a massage therapist but too busy for me to get the benefits!! She did a short massage yesterday. I bought her a portable table and am having her work off the payments with massages!:)

kicker

05-10-2011 07:01 AM

Once in awhile (I try not to), I take Hydro/Acetam (generic Vicodin - More for sleep when I'm afraid discomfort might interfere. (love my sleep). Would it and LDN clash? Want to try LDN, could easily stop Hydro/Acetam, (take maybe 1 every week or 2)

nancymarie

07-11-2011 08:54 AM

Does PPMS ever level off?

Does anyone know if PPMS ever levels off and does not proceed to total disability ( bedridden, unable to move both arms and legs)?

SallyC

07-11-2011 11:46 AM

Quote:

Originally Posted by nancymarie (Post 785512)

Does anyone know if PPMS ever levels off and does not proceed to total disability ( bedridden, unable to move both arms and legs)?

I don't have PPMS, I guess I'm labeled SPMS, after having been RRMS for many years. MS is a mean disease and has no favorites. It's an equal opertunity employer.:rolleyes::mad:

IMO, PPMS starts out progressive and you never really have a remittance, but I believe there is a platteau for PPMS. It may be different for each individual, but will happen.

There is only one Type of MS that never stops until you are bedridden or die and it is very very rare. I don't know anyone who has had it, so don't worry about that.

Be well!!:hug:

nancymarie

07-11-2011 01:12 PM

Quote:

Originally Posted by SallyC (Post 785549)

Thanks for that Sally. It's good to know that H hopefully won't have to end up that way. He stays in the present mostly but it's I who get worried about the future. This disease is mean enough without taking even more away.

hugs
]M

DVORA

10-21-2011 05:04 PM

Quote:

Originally Posted by nancymarie (Post 736844)

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

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