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What disease-modifying treatment has worked for your MS and which hasn’t ?
There are lots of disease-modifying treatments (DMT’s) for MS, which has worked for you and which hasn’t?”
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6 Replies
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Hi Debi. I was on Avonex for 3 years and was still getting lesions. I switched to Tysabri and felt better right away. No new lesions in over 12 years. It’s a big decision but one I don’t regret.
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Wow that is great,Bonnie! I am happy for you, thank-you for sharing your story .
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In the early 1990’s, I was on Avonex & Copaxone for over a year, then went off them because I noticed no improvement, & to this day, I am none the worse for it!
I still think dormant Lyme disease is a precursor to MS (or what some call Chronic Lyme), simply calling it another name, Multiple Sclerosis (meaning multiple scarring), just like dormant Chickenpox becomes Shingles! If a dormant disease surfaces decades later, we just give it a new name for new drugs! I’m just giving patients something to think about.
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Hi Joni,
I have heard of the Lyme/MS connection, and just like fibromyalgia, I think they could be early beginnings of MS. It’s hard to say, but it would be beneficial if doctors could diagnose MS sooner.
Thanks for sharing your DMT story!
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Unfortunayly I caught shingles, guess four to five years before my PPMS diagnoses, it went untreated as it was a Bank Holiday weekend, all GP surgeries were closed, it was one of our dogs first big agility contest, the day was snowing, it got called off, we were left hanging around in the cold waiting to see if it was going to go ahead or not…It didn’t, so by the time the GP surgery became open after the Bank Holiday period closing, it had gone over the three day timescale for Shingles treatment…To this day I often wonder if this was the starting, the cause of my now PPMS…Of course at the time when waiting around out in the cold and snow, I had no Idea I was suffering a bout of shingles, I just had an itchy type of rash around the right side of my waist from the centre of my back to my belly button…
Jackie
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Possibly Jackie, that is interesting! I’m sure that was painful, I’m sorry you had to go through that.
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