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#11 | |||
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Member
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Thanks guys! A couple more hours to go 'til my appt.
Cindy, I remember when I went off Rebif my neuro said no more interferons. So, I plan to remind her of that and see what might have changed her mind. Cheryl, the melanoma was a scary, scary time for me and I don't know if I can go through the worry. I am going to ask my neuro what she has heard about the melanoma risk with Tysabri. My mind is thinking a hiatus from everything might just be nice.
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If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen. --Loretta Girzaitis Trust that your abilities are stronger than your disabilities - Maxene Kupperman-Guinals |
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"Thanks for this!" says: | SandyC (05-01-2008) |
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#12 | |||
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Senior Member
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Good luck my sassy friend. Let us know what the doc says
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. Roadtrip Wannabe |
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"Thanks for this!" says: | sassy (05-02-2008) |
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#13 | |||
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Member
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Well...no changes at this time. We both agreed to try to continue the Copaxone. She admits, as does Shared Solutions, that they have no answer to what causes this and I am the exception to the rule.
I decided I was willing to take my chances with Copaxone. She offered some meds to pretreat before the injection each day to maybe stop the spasms or pain but since they don't happen everyday I opted to just go with what I do now and hope for the best. She is going to check into the Tysabri with my melanoma history and I have a 1 month follow-up appt to see how things are going then. She did say she is not willing at this time to retry any interferons and I totally agree with her. And she also would not like me to be totally off DMDs. I totally forgot to ask about LDN. Didn't take any notes with me so plan to do that next month! The worst part of the visit? I had gained 3 lbs since March 17th visit! Ugh! I blamed that on my breakfast, coffee and lunch with Bannet last week! And that was well worth it! So, guess still the same here and will see how it goes.
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If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen. --Loretta Girzaitis Trust that your abilities are stronger than your disabilities - Maxene Kupperman-Guinals |
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#14 | |||
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Elder
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The couple of IPIRs that I had were also not typical. Before I could even get the used needle on the table, I felt like someone smacked with me a car. right in my back! it was like my body was a thick sheet of ice, and that ice layer cracked right through. it was awful!
My first one lasted for 2 minutes. I felt my heart slamming, and my back hurt so much that I almost couldnt draw air in. The second one was the same way, but it was my breast bone. then it spread across my ribs. it lasted less than 2 minutes. my third was my lower back across my hips. it was wild the way it cut right to the bone. I was pulled off of it for 2 days, and a stress test showed no cardiac issues. it took a few days for the soreness to subside. I failed at the interferons, so copaxone is kinda my last hope. I cant do LDN because of other meds I take, and no Ty since its interferon family. My liver isnt happy with interferons. So, for now I cling to copaxone.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#15 | |||
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Wise Elder
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I just remembered something Sassy. When Jim was on Copax the neuro prescribed prednisone pills to help ease his shot reactions.
You gained three pounds? Hmmm, I am meeting Cindy and Beth in a couple of weeks. Great, I just lost three pounds. lol
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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#16 | |||
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Member
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I had another one of the dang reactions this morning. I swear, I don't know what to do...
Sandy, I have to tell you when Beth, Cindy and I spent a day together we went to breakfast at Starbuck's, pre-lunch at an ice cream parlor, lunch at a Mexican place and then back to Starbuck's for a sugary great tasting drink. And with all the laughing I did I think I lost a pound instead of gaining. And besides that the waiter at the Mexican restaurant followed us (Cindy) to Starbuck's and I have the pic to prove it!
__________________
If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen. --Loretta Girzaitis Trust that your abilities are stronger than your disabilities - Maxene Kupperman-Guinals |
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#17 | |||
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Wise Elder
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Oh man, what have I gotten Jim and I into? Sassy, you sure you can't come? I would love to meet you.
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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#18 | |||
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Member
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I would love to be there! I just can't do it and leave my grandbaby!
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If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen. --Loretta Girzaitis Trust that your abilities are stronger than your disabilities - Maxene Kupperman-Guinals |
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#19 | |||
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Wise Elder
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I know, maybe next time. Grandbabies take priority.
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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#20 | |||
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Member
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Dejibo - since when is Tysabri considered in the interferon family? That's news to me. Ty can have an affect on the liver - but not guaranteed - whereas, usually if your liver has problems with one interferon, all three would be ruled out. However, from what I've been told, that isn't the case with Tysabri. If you're interested in Ty, then I suggest talking with your neuro (or another neuro) about this!
Good luck. |
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