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09-25-2009, 09:13 AM | #1 | ||
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New Member
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Hi, I am new here. I have been searching all over the web for an answer to this question. I am sure that the answer will vary, but I would love to hear some people's answers. I was diagnosed with MS in 2003. I was on copaxone for most of that time. I was not always compliant. I will admit that. I never had any change in MRI during that time, but.. my initial MS attack was severe. I thought I had a stroke. I lost all use of my right side. I have 2 large lesions in my left peri ventricular region of my brain and one smaller one in the right hemisphere. My main symptoms are fatigue, decrease in cognition, depression, memory loss, pain in my ankles(both) , pain in my wrists and fingers, numbness and tingling in my hands and feet, spasms in my calfs. My calfs feel like bricks. I do not walk with an assistive device. I worked until May of this year. I had a reasonable accomodation , work no more than 8 hours a day, but my company continued to give me more work than could be done in an hour day and for the last 2 years, I went from the bed to the computer to the bed. I used to walk for 45 minutes a day and had great muscle tone. I felt great 2 years ago. In a 2 year period, I completely went downhill. I ended up giving my house away to the bank so I could move in with family and going on disability. I have just started Tysabri. I am 37 and had a great career and I am not ready to give up yet. I think I can come back. I don't have much energy, I have pain every day, am depressed and have problems with my cognition and being disoriented. I cannot multi task. My memory is impaired. Sorry for the long story, but has anyone had similar symptoms and started tysabri? Have you noticed an improvement? After which infusion? How did you know you were improving? I don't know what it feels like to feel well. My doctor asks me if something hurts and I dont know. I forget what it feels like for things to not hurt. Does that make sense? OK, Enough rambling. Thanks for your responses, I feel lost. Sorry.
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"Thanks for this!" says: | barb02 (09-27-2009) |
09-25-2009, 12:38 PM | #2 | ||
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Member
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I noticed a difference after the first infusion but my MS issues were just physical - walking, fatigue, numbness of my left side. I've seen messages from others that said it took 6 or more of infusions until they noticed anything. In the end, we're all different.
So keep your hopes up and I wish you great success in getting your career back on track. |
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09-25-2009, 01:22 PM | #3 | |||
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Elder
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mich it sounds like you have been through a war and back again.
I am glad you have been pro active, and are starting on Ty. For so many folks their lives have been turned around. I hope the same for you. You may also want to consider asking for some depression help. That is alot to go through in such a short amount of time! I think you will find great support, and tons of good answers here.
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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09-27-2009, 12:02 AM | #4 | |||
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Grand Magnate
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I really can't say I've noticed improvement after any one infusion..It seems to be getting better a little at a time. I, too, have cognitive difficulties, as well as vision problems and poor balance/strength. I have my 7th infusion in a couple weeks, so I haven't been on it too long. I hope you get the improvement you're looking for. Many have had remarkable results after the 3rd or 4th infusion, from what I've heard.
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09-27-2009, 12:33 PM | #5 | ||
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Junior Member
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I'm sorry to hear you are having such a hard time. I've had 17 or 18 infusions. I'm having to go off tysabri, but did have good results from it. I noticed improvement in about 4 mos. I also got back some feeling the Dr said I would never get back. I saw one woman go from a chair to a walker after her 1st infusion. I really think the results depend on the individual. I wish you well!
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09-27-2009, 06:20 PM | #6 | ||
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Member
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Quote:
Linda |
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09-27-2009, 06:24 PM | #7 | ||
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Member
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Mich, sorry to hear you've been hit so hard
I started to notice better balance and less fatigue after #4 . Best wishes, Linda |
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