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#1 | |||
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Elder
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Hi Harry,
![]() No MRI of the spine, but there's no need. My walking and strength have improved. I still have lingering old symptoms but not as bad. I think the Tysabri is doing a good job for me. I hope you're doing ok. ![]()
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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#2 | |||
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Magnate
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The first showed "numerous lesions, many enhancing". I did a course of oral steroids in the month previous to starting Tysabri because of that MRI. (orals because I was away for three weeks before my infusion and had to be able to take the steroids while away, I think it was a total of 3600 mg in three days) MRI at 6 months showed no new lesions, no enhancing lesions and a sizable reduction in the size of several lesions and some lesions resolved as in gone. MRI at 18 months showed stability, no new lesions, no enhancing lesions and further reduction in size of large lesions. I should be due for another one pretty soon here since I am up for # 24. So far, so good. Quote:
I also agree with what you said about Tysabri. It has allowed me a quality of life that I didn't have before and wouldn't have now, and at this point the only downside is the PML risk, but I don't worry about it. I'm too busy living life! ![]() Quote:
![]() ( Wiz and I started within a week or two of each other! She's just a lil behind!) ![]()
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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#3 | |||
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Elder
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Quote:
![]() But seriously... I did some major gardening last summer and that just thrills me to no end. ![]() ![]()
__________________
Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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#4 | ||
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Senior Member
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Here are the updated graphs of my physical condition after being off of Tysabri for a few months. Note that I have not started Rebif yet because a "hidden" cost has arisen, and it is as high as the Tysabri cost issue. Alas, nothing is free unless you are already destitute according to the pharmacy.
It is time to just press onward and see what can be done with the assistance programs the I listed in another thread. At least I have a pulse and I am still able to collect data! ![]() LOL -Vic |
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#5 | |||
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Member
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On Tysabri and love it. . |
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#6 | ||
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Senior Member
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Wiz - My prediction is that it will work out fine, but it may take just a little more time.
![]() Natalie - I think that we can resolve this issue. No worries needed. (I did stay at a Holiday Inn Express last night, so I can get this done. ![]() -Vic |
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#7 | |||
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Elder
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I had infusion 23 yesterday. It went pretty well but I've been in a down mood the past week or so. I think it's the lack of sunlight and exercise.
Anyway, there's this form I fill out at every appt and I listed that I've had anxiety due to work issues. So the neuro asks if I'd like to talk about it. He's such a good listener and truly cares about his patients. Anyway, he mentioned how women can talk problems out or cry to release anxiety (saying it's usually easier for them than for men to do this). So I get teary eyed and he notices right away and hands me the box of tissues. It only got worse from there, the water works were on. He kept talking to me and it helped. But my main concern was stopping my tears. I hate it when I cry in front of anyone. ![]() Also, the nurse was having a rough day so the other nurse came in to help with my infusion. I always look the other way when they work on the infusion site because I don't want to make them nervous. I didn't notice that they started the Tysabri. She'd started me on saline then went to mix the meds. I was thinking I was still on saline. She assured me that it was the Tysabri. That's what they were doing when they were working on my arm together. I think I'd been distracted about my work problems that have been eating at me for awhile. It scares me when things like that happen though, like it's worsening cog fog.
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 Last edited by ewizabeth; 02-19-2009 at 08:56 PM. Reason: Had to clarify one thing. |
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