Which way to go

[MSbro]

Have been reading posts on this board for quite a while now and not sure what info I should give my brother.

He is in early 40's and has been recently diagnosed with MS although he has had symptoms for quite some time. Doctors have suggested he start on one of the immune system altering drugs or perhaps even Tysabri. But after what I've read, it scares me to think of what they may do to him.

He is very stubborn, has a young family and seldom listens to his family or friends when it comes advice, especially medical info.

[ElliotB]

" it scares me to think of what they may do to him"

Most DMDs help the people taking them. What is your concern?

[MSbro]

" it scares me to think of what they may do to him"

Most DMDs help the people taking them. What is your concern?

I read more than one post (one which was an independent report) showing that the DMDs really don't do much if anything to help MS in the long run. And Tysabri...that drug seems scarey! And if you do nothing, that may not be good either. Very frustrating.

[ElliotB]

"showing that the DMDs really don't do much if anything to help MS in the long run"


You may need to do more research, and suggest that after you do present your brother with all the facts, and then let him decide. Sounds like he has made up his own mind at this point anyway. Ultimately, the final decision should be his. But knowing all the facts may help him make the best decision possible for him and his family. What has his doctor said? Will he listen to his doctor.

[MSbro]

You may need to do more research, and suggest that after you do present your brother with all the facts, and then let him decide. Sounds like he has made up his own mind at this point anyway. Ultimately, the final decision should be his. But knowing all the facts may help him make the best decision possible for him and his family. What has his doctor said? Will he listen to his doctor.

I've tried to get as many facts as possible about these drugs and trying to sum it all up in one tidy bundle is difficult. One article says they help, another article says they don't help in the long run compared to taking nothing and some are in between.

We really aren't sure what his doctor says because he seldom tells us much. Think he has to deal with the anger of the diagnosis first and hopefully he'll come around. I guess time will tell.

[Luongo]

It's pretty difficult to say there are clear benefits when just a few topics down you have....

http://www.thisisms.com/forum/general-d ... 26181.html

...and...

http://www.thisisms.com/forum/general-d ... 26232.html

There are up-sides and down-sides (and a whole lot of just plain unknown in between) and everyone has to evaluate things for themselves. Some people take the DMDs and see benefit... others don't and suffer. Conversely, some take the DMD's and deteriorate rapidly, while others do nothing and run laps around the neighborhood decades on. That's the problem with looking at DMD success rates... it's such a personal and unique disease that it's difficult to measure whether you are seeing success or just a healthier batch of subjects. Regardless, healthy eating, blood-pumping exercise, and proper supplements are something every patient should practice and there is a wealth of information here for that.

[MSbro]

There are up-sides and down-sides (and a whole lot of just plain unknown in between) and everyone has to evaluate things for themselves. Some people take the DMDs and see benefit... others don't and suffer. Conversely, some take the DMD's and deteriorate rapidly, while others do nothing and run laps around the neighborhood decades on. That's the problem with looking at DMD success rates... it's such a personal and unique disease that it's difficult to measure whether you are seeing success or just a healthier batch of subjects. Regardless, healthy eating, blood-pumping exercise, and proper supplements are something every patient should practice and there is a wealth of information here for that.

Your comments pretty much sum up my reaction as well after reading so many posts. One big question mark! Not sure what my brother is going to decide but at the moment I think he's not going to take anything. How can one argue with him when you read about the varied and sometimes terrible results when taking one of the drugs the doc wants you to try.

[1eye]

I can only go from my own experience. This biotin may help but once your brother is diagnosed with Secondary Progressive MS (and we don't have a sure-fire way to prevent that) he will suddenly lose the option. Doctors do not prescribe DMDs much for progressive MS. It'll be about 10 years or so after diagnosis. The day may come sooner or later, or not at all. A fine kettle of fish.