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Old 01-19-2008, 11:18 AM #4
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Hi Keb

Nice to hear from you again too, and I am sorry you've had such a bad time. I can relate to your situation somewhat with the number of flares, not quite so close together, but I have had a lot of them since I was dx'd in 2001. Here a quick recap of my hx --

First flare Dec 2000, battery of tests for a month.
Second flare March 2001, dx'd
Third flare April, 3 days of IV Solumedrol
Started Betaseron June 2001
Flares every 3-4 months
I added Methotrexate to the Betaseron in 2003, did that for a year, no help
May - Sept 2003 and 2004, I did pulse steroids to slow down the flares, no help.
January of 2004, I did a 5-day IVSM, ended up in the hospital with a reaction to the IVSM - won't do that again!

Stopped Beta in Dec 2004 to start Tysabri. I had 2 infusion before it was pulled from the market.
April of 2005 I started Copaxone. Had a severe reaction to it after a month so stopped that.

Waited for Ty to be returned to the market so my treatment of choice was monthly pulse steroids. Flares continued every 3-4 months.

Ty was reintroduced, insurance company denial.

Entered clinical trial for Tovaxin. I seem to be doing pretty good. Last year, I had 2 flares.

So, technically, I failed Betaseron. I felt horrible on it, and it did nothing to stop the progression of MS for me. If I had not been accepted into this clinical trial, my next stop would have been Cytoxan. I am not a candidate for IViG as I have too many allergies.

I know this is long, but I wanted to give you a full history so you can see that you are not the only one in the same situation. I also suffer from severe fatigue, sensory problems (numbness, tingling, hypersensitivity, pain), some cog fog when I am having a severe flare, mobility problems during a flare, bladder retention. But fatigue and pain are my issues.

I have also considered LDN (low dose naltrexone) but will see how this clinical trial plays out, I have another 1.5 years to go.

Maybe Beta isn't the best choice for you. I hope you get better soon. I think Snoopy gave you some good sites to look at. I don't know what other meds you take for symptom management but you might look into some alternatives. Keep us posted.
__________________
Cheryl
Dx: MS 2001 CRPS 2009




“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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