Need advice for a friend w/MS (sensory issues)
Posted: Thu Apr 08, 2010 10:14 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 =)
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 =)