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Old 06-18-2008, 07:06 AM
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Join Date: May 2007
Location: Michigan
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15 yr Member
sassy sassy is offline
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Join Date: May 2007
Location: Michigan
Posts: 681
15 yr Member
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Hello, I'm in a dilemma thought maybe you guys could give me your honest opinion. I know I am the only one that can make this final decision and was going to leave my family out of it because if the worst happens I don't want them to feel guilty. I finally broke down and told my sister with the upfront statement that I just wanted her to listen. Listen she did then hugged me and said it sucked that I had MS and more than equally sucked that I am now faced with this decision. Good answer sis!

So, my dilemma is I have been on an interferon (Rebif) which caused me to go into a deep, deep depression with suicidal tendency so neuro switched me to Copaxone and refuses to prescribe interferons for me ever again. I have been on Copaxone 2+ years but I have started having these IPIRs but not the typical one. Mine consist of major pain in back, neck and head that last about 15-30 minutes and then sometimes I have some leftover pain for +-24 hours.

They started to happen with more and more frequency and neither Shared Solutions nor my neuro know of anyone else with similar experience. They have no idea if they could cause permanent damage.

My neuro is leaning towards taking me off Copaxone and starting Tysabri. Now, my dilemma-I am a melanoma survivor. I have been cancer free for 13 years but I remember the fear of dying like it was yesterday.

The recommendation from my neuro is that I have a full body check with a dermatologist, which is scheduled for tomorrow, and then if that is clear go through the rest of the process to start Tysabri.

The month of May was a busy, busy month for me. I haphazardly did my Copaxone injections but this week have started back full time and no IPIRs. I plan to continue with the Copaxone until the decision for Tysabri has been made.

My MS is very steady and I am on disability but I am able to go about doing most everything but with daily pain, cognitive issues that are not noticeable but I know they are there, fatigue, and emotional lability. Thank God for drugs that help me through the day.

So, in all honesty, what would you do if you were in my situation? I know no one can decide this for me but just needed to talk it out and get some opinions from the experts.

Thanks for wading through this small novel.
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Trust that your abilities are stronger than your disabilities - Maxene Kupperman-Guinals
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