Friend frightened and in need of support.....

[Tracy42]

Hello,

I have a wonderful friend who is 18 months into his MS dx. His pain and tightness, and edema in his legs have never "remitted". His right hand also is always in pain...(but he handles it with a great attitude)

He has had some new things that have been no big deal, but part of MS is trying to not think every new twitch is MS. He is incredibly active, working, and now, he is incredibly afraid.

Today he got results from his MRI showing a new lesion in his spine (that is pinching a nerve) and a new one in his brain. The Dr. Is switching him to Tysyrbi (sp). And has told him he is concerned (now he has to sit with that in his brain all night

I have MS as well and thought this wonderful community may have some thoughts for him. His name is Scott. Does changing meds mean he is most likely progressive? Well...I know the answers (there is no answers) but, I guess I'm hoping someone has had the same experience and is doing well. I think if he knew there was a world of positive, loving and supportive people out there, it may help him get through the day. Any thoughts, words, experiences, would be so appreciated.

God bless

[hunterd]

just because the doctor is suggesting a change in medications does not mean that he is progressive. I had to switch off of Avonex to Ty and then switch from Ty to copaxone. All of the changes were necessary because I have built up antibodies to the medication. There is going to be some progression, that is the nature of MS. No one can tell how quickly any person is going to progress.

It is only natural to be afraid of the unknown, the only way I know of to combat this is to become as knowledgeable as possible about it. As with everything, knowledge= power.

[Tracy42]

Thank you huntered

Thank you so much...he hasn't been ready for this site, but I am going to send every response to him! Thank you!

[tejokid]

It's hard, at first, to keep MS from being the star of the show--hang in there, Scott. Everybody's journey is going to be different--the medications that work for some won't work for others. Think of all the people with high blood pressure or high cholesterol who take different medications--don't worry about what works for anybody else, just work with your doctor to find out what works for you. It might take a few tries to find the best option--don't give up hope if you have to try different meds. The process is frustrating, but the outcome can be positive.

There's a lot of difference in MS drugs. Except for a couple of brief side trips with Avonex and Rebif, I've been on Copaxone since it was first introduced. The other drugs are exactly what other people need--just because I don't do well on them doesn't mean they're not good options for many. Actually, it's great that your doc is changing your meds--I've had a couple of doctors who were oblivious to what was going on with me, and you're fortunate to have one who is proactive to this extent. Good to have somebody in your corner. (And this web site, and these boards, will give you a whole community that's in your corner.)

MS is formidable--it's wildly unpredictable, has symptoms so varied that no two people's experience with it is identical, and it seems like there's just no getting away from it. But while MS pecks at your myalin like a bunch of deranged chickens eating grain, living in fear will eat at your soul. MS is in control of some things, but you're in control of everything else.

I had occasional symptoms of MS clear back in grade school, which means I've had a problem for----over 50 years. Let's just say that nobody questions my use of handicapped parking spaces when I get out of the car, what with the forearm crutch and the peculiar gait, but after all this time I remind myself of this--I'm still standing. Don't ever give up.

[Tracy42]

Thank you

Tekokid, that will be nice for him to wake up to.