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Old 11-10-2011, 01:06 PM
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AynaDee AynaDee is offline
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Join Date: Jul 2010
Location: Illinois
Posts: 266
10 yr Member
AynaDee AynaDee is offline
Member
AynaDee's Avatar
 
Join Date: Jul 2010
Location: Illinois
Posts: 266
10 yr Member
Default 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.
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!
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