Life with no DMD
 

Hey everyone!

I stopped taking Rebif in May. The first two weeks off of Rebif was horrible, I was definitely having withdrawals. I would get the flu like symptoms and a fever everyday. It was like I was injecting Rebif everyday for two weeks.

I am going on my 6th month of not having a DMD. I don't have 3 guaranteed sick days a week. I have been feeling the best I have since I was diagnosed. I have also noticed my symptoms are not as irritated from the Rebif. So instead of having a pain level of 7-10 everyday I am at a 3-5 everyday. My muscle spasms haven't even been as dominant.

I have also cut red meat out of my diet. It's amazing to see how much that is helping as well.

I am trying to get adapted to the Swank diet, but haven't been as successful. I am hoping to eliminate yeast, dairy, and eggs out of my diet by the end of this year.

I still have my numbness in feet/hands, but its not the painful numb, so I can deal with that. I still am unable to work 30-40 hours a week, but have found a delivery job that I love.

I just had my hearing for SSI today. I was nervous before arriving, but the judge seemed to have some compassion, he was taking notes on every symptom/problem I have with work. I have a good feeling about that. Now I just have to wait it out.

My neurologist still is unaware of me stopping Rebif, but I still know in my heart that this is the right move. My injection sites look much better, but it's like I can still where I used to inject that horrible drug, it still hurts to rub those areas.

I did experience bowel dysfunction at work the other day. :eek:
Luckily I was wearing baggy pants, it was still mortifying. I pray that will never happen again, but so far it has happened twice.

I noticed in the shower today that it looks like I am missing a chunk of muscle in my left upper thigh... not sure what that is.. but theres a huge dent in that area. It doesn't hurt, just grosses me out.
Is that my muscle atrophying?
I would certainly hope not.

Sorry it has been so long since I have been on the forum. After I stopped taking Rebif, I felt like I am getting some of my life back. It's like the sun came out from the black rainy skies! :D

Hi Aynadee, nice to have you back.:) Obviously you made the right decision in stopping Rebif and congrats on feeling better.

I'm sorry about the fact that you still have MS with all it's nasty sx, especially the bowel misfuntion. Been there done that :eek:.

There are other DMDs you could try, but I understand wanting to be free of the side effects of them, especially, it they aren't working. The big dent in your leg could have been caused by the shots. I hope it goes away.

LDN might be something for you to try.:hug::hug:

So gad you're feeling better. Diet plays a huge role in how we feel - with or without MS. It might take a while to notice any really big difference but you can rest assured that a good diet will benefit you no matter what. Give it some time. MS isn't going to go away but you don't have to be miserable and/or let it rule your entire life.

i'm very glad that you're doing better. sometimes stopping meds is a good idea. the indentation sounds like it might be from injecting if you were in that area.

don't be afraid to tell your dr. it's your decision and you know what's right for you. i hope you con't to do well.

I've been DMD free for almost 3 years and feel soooooooo much better than I did taking them. I was on Avonex for 3 years, copaxone for a couple months ( the dents in my legs went away) and Rebif for a short period. Never regreted stopping all of them. Some ppl do ok on them and for that I am glad, they just weren't for me. Have had no relapses without them thank God.

Thank you all for the support! :grouphug:

I hopefully will continue to do well off of the DMD, I don't want to revisit those days.

:grouphug:

They're not for everyone. I'm glad you at least gave them a try. :hug: There's many here that don't take a DMD. There's many that do. The great thing about this place is that you can do either and still be loved! ;)

Welcome back Aynadee. I know that some people do well on a DMD but I was not one of them. After 2-1/2 years on Avonex, I stopped because it was like poison to my body. That was a low point in my life and I was probably six months away from filing for SSDI. That was 2004 and I'm still working full time.

I didn't have any dents in my leg from the Avonex but to this day my muscles do still hurt and are tender from time to time from the IM injections.

Good luck with the hearing - hoping you'll hear favorable results soon!

I would have to agree with you--I felt so incredibly toxic while using Rebif. My brain felt sick all the time and my insides and outsides were not in good shape.

I am somewhat worried about this dent, it seems to be growing in length. :confused:

The hearing went very well and the judge definitely had compassion for my case. I haven't heard anything back yet. I wish so much I didn't have to go this route. I want to work full time again, shoot, 30 hours a week would even be awesome. But at least I have found a job where I am both on and off of my feet all day, so I am able to work 8 hour shifts, just not all week.

MS is a pain in my rear end, but living with it for almost three years now I have learned alot, and since I have been off of Rebif I feel like I have a tiny little portion of control -or maybe thats just me knowing my limitations and not pushing the envelope anymore ;)

I stopped LDN last Saturday as a stipulation for surgery. I haven't gone back on it and plan to take a little break from it. I can't notice a difference either way with or without it......so I guess I'll just save a little money and see how things go. If I discover I need it I have some left over to start taking again.