Need advice for a friend w/MS (sensory issues)

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Need advice for a friend w/MS (sensory issues)

Postby ILoveHim » Thu Apr 08, 2010 11:14 am

A very close friend of mine (35 yrs old) revealed to me a few months ago that he has RRMS, dx in late '01. I've known him for over 10 yrs and I was completely devestated when he told me. It had finally made sense to me why he was getting headaches all the time! If he never told me, I never would have known. He is very athletic (running, biking) and has no ambulatory or 'outward' symptoms.

He is very, very private about his dx. Only his immediate family and 2 other people know. I have become an outlet and confidant for him for the last few months...I welcome it, he has never really had anyone to talk to about it.

He was on Avonex and is now on Rebif (I can't remember the dose) and has been for a few yrs now.

His most common complaint is sensory issues, esp at night/sleeping, even when he's sleeping during he day (he works overnights). He describes it as feeling from the waist down that he's cold but he's hot. I was wondering if 'wicking pajamas' might help with his comfort? He says sometimes a hot/warm shower helps with the sensory issues.
We live in the Northeast. The winters are very tough and uncomfortable for him and he wants to move to warmer weather.

On the nights he takes his Rebif, he takes 1 Aleve, sometimes 2 and that sometimes keeps the flu-like symptoms at bay. Advil helps with breakthrough discomfort.

His other meds are VitD and B12 supplements for low blood levels. I think he might benefit from B12 injections, but that's not for me to decide =)

He is supposed to have an MRI to decide if the Rebif is working....maybe switch to Copaxone?

I want to be able to fix this for him and I know I can't but I want to try and figure out how to help him be more comfortable when he sleeps. There is nothing worse than not getting a good nights sleep. I'm a nurse (MS is *so* out of my element but I know what the disease is like) and I am not used to not being able to troubleshoot and fix things and I am frustrated by this!

Any advice is welcome and appreciated =)
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Postby SCGirl » Thu Apr 08, 2010 12:56 pm

I wish I could help him, but I have the same sensations at night. He sounds very fortunate to not have any other symptoms - good for him!! I will add that Rebif did nothing for me or my symptoms, just my experience as I am sure there are others that were helped tremendously by it. I am currently in Copaxone and feel better than I have in months. The downside is that this requires a daily shot, but for me that was just another bump in the road. I wish your loved one the best, he's lucky to have a friend like you!
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Postby MoJo » Thu Apr 08, 2010 3:42 pm

Wow he is truly a lucky person to have a friend who cares so much, and you are very special person to want to help him.
I have not heard of the PJ's you are referring to, but i would try anything!! I have similar symptoms in my feet and hands.
I wish your friend good luck on the copaxone, I tried it but it wasn't for me, I am abouts to start Avonex :(
I wish you and your friend good luck. xx
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Postby AMcG » Thu Apr 08, 2010 5:54 pm

An obvious thing to try is IBT(Inclined Bed Therapy) It is harmless and easy and I sleep well since I started doing it. There is a long thread on here about it and it has helped many people. Just look under forums/CCSVI/Inclined Bed Therapy.
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Postby chrishasms » Thu Apr 08, 2010 9:11 pm

I believe he is suffering from what is called Neuropathic pain. I used to get the same feelings in my legs a few years ago and I took Neurontin for it and it help tremendously.
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Re: Need advice for a friend w/MS (sensory issues)

Postby Fayruz » Sat Sep 22, 2012 10:17 am

I may be totally off with my suggestion but right after I was diagnosed I got really cold sometimes (in a very heated apartment) so under my sheet I put woolen blanket and I strictly use natural fabrics for blankets etc. because I feel it's an entirely different warmth than synthetic materials.
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