What would you do?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

What would you do?

Postby Courts » Mon Jun 21, 2010 9:31 pm

Hi everyone, I hope you can give me some perspective on my situation :)

I've had MS for 5 years & I'm 25. Most of my symptoms have been tingling & numbness. On average I have one relapse a year (right after new year) and they last approx 6 - 9 months. When I'm in remission the only symptoms I get is tingling in both legs when I do anything cardio more then a brisk walk and fatigue.

At the moment I'm experiencing my worst relapse so far. It started on New Years Eve and at the worst (1.5 months ago) I was using a crutch to help me when I walked as my left leg was very weak, aching and the knee would buckle alot. From the knee down it felt completely dead, at night I would touch it with my right leg and did not recognise it as my own, thinking it was my partners I would accuse him of speading accross my side of the bed :lol:

My balance is still off but much better, I don't need the crutch now and I manage better with stairs. It gets very cold and the ankle is stiff but the aching is gone and its numb but not completely dead feeling. Although in the last couple weeks I've had my first symptoms afftecting my bladder which I have some medication for. So my neuro says that its improved and will most likely continue to improve however this pattern of relapses every year means I could possibly get funding from the government for interferons.

I've never tried them and I don't really know many people with MS so its hard to get a good perspective on the situation and whether the interferons would be worth it so my question to you all is, what would you do? Do you think in my situation they would be worth taking or in the grand scale of things is my MS really not that bad?

Any help is greatly appreciated :D
User avatar
Courts
Getting to Know You...
 
Posts: 14
Joined: Wed Jun 16, 2010 3:00 pm

Advertisement

Postby dignan » Mon Jun 21, 2010 9:38 pm

Courts, sorry to hear about your problems. If I was in your situation, I'd try the interferon. I'm a bit biased as I'm on rebif and have been doing well (though I can't say whether or not the rebif has anything to do with it, maybe I'm just lucky). There definitely seem to be responders and non-responders to the interferons -- some do quite well and some get no significant benefit. Unfortunately, the only way to find out is to try it.
User avatar
dignan
Family Elder
 
Posts: 1608
Joined: Wed Aug 11, 2004 3:00 pm

Postby Courts » Mon Jun 21, 2010 9:51 pm

Hi dignan, thanks for your response :) How long have you been on Rebif and what sort of side effects do you experience (if any)?
User avatar
Courts
Getting to Know You...
 
Posts: 14
Joined: Wed Jun 16, 2010 3:00 pm

Postby reginagutierrez03 » Tue Jun 22, 2010 4:30 pm

I know how you feel I am also 25 but have only had ms since December of last year. This is only my 2nd relapse and its been hell. I am used to working out and running everyday and my right leg feels how you described almost dead and my knee buckles alot. The left side of my mouth and tongue are numb. I take Copaxone because I breast feed and you can not breast feed on an interferon. I have only been on it since feb. and they say it can take up to 9 months to work. I would try an interferon but I am giving copaxone a chance because I only have bad injection sites and no other side effects. Without my government insurance I couldn't afford it so if you can get on go for it ,especially if it will help you facially.
User avatar
reginagutierrez03
Newbie
 
Posts: 4
Joined: Sun Jun 13, 2010 3:00 pm

Postby dignan » Tue Jun 22, 2010 6:47 pm

Courts, I've been on rebif for over 6 years now. I don't experience any side effects except for some mild injection site reactions (slightly red and sore for a day or so after some injections). Some people get really bad flu-like symptoms and generally feel like crap on the stuff, but others don't have much, if any, reaction.
User avatar
dignan
Family Elder
 
Posts: 1608
Joined: Wed Aug 11, 2004 3:00 pm

Postby patientx » Tue Jun 22, 2010 6:49 pm

Courts:

Sorry to hear what you're going through I haven't been hit that hard yet, but the tingling in the legs after a brisk walk sounds familiar (I get this almost all the time. now). Also, I have had 2 periods that affcted my bladder.

My feeling after being diagnosed was to try something until something better comes along. I realized that the various DMDs only do so much, and if I had to pay full price or a large co-pay, I might reconsider if they are worth it. But, in the meantime, I will continue to inject until something better comes along.

Just out of curiosity, is Copaxone an option? I'm not saying it's better than the interferons, just another option.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm


Return to General Discussion

Who is online

Users browsing this forum: No registered users