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Old 02-22-2015, 07:18 AM
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Lynn Lynn is offline
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Join Date: Sep 2006
Location: Australia
Posts: 660
15 yr Member
Lynn Lynn is offline
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Lynn's Avatar
 
Join Date: Sep 2006
Location: Australia
Posts: 660
15 yr Member
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Quote:
Originally Posted by MSbelle View Post
I guess it depends on so many factors... which DMD to go on. My disease is aggressive and the secondary immune diseases are manageable and even curable with medications... they really don't phase me. Nothing could be worse that Lemtrada could cause than my course of MS. But I realize not everyone has such an aggressive disease progression and I'd be a lot more wary of it if I were still able to walk alright.
Yes you are right about personal circumstances, and the course of your disease.

To my knowledge no auto-immune diseases are curable – though many have medications (like MS) that can modulate the effects. My (other) auto-immune disease (thrombocytopenia) is not curable, can be life threatening, and there are no medications that control it, although steroids can help when it is really acute.

I was diagnosed with RRMS nearly fourteen years ago. My Neuro told me that with my lesion load, and clinical presentation, he expected me to be secondary progressive within two years, and profoundly disabled within five years. I would have jumped on anything to halt it.

At that time, Betaseron was the strongest drug available, and I couldn't start it fast enough. Luckily for me, my mobility, vision, pain, bowel, and bladder control improved over the next few years. Probably because Beta slowed down the inflammation and allowed some of my nerves to remyelinate. When the side effects became too much to bear 8 years later, I went to Tysabri – which I have used for the last six years.

Thing is though, we all have our own ‘fully-customised’ disease - no two people suffer the same and from the sound of things, you are having a really bad time. If I were in your situation now, I would likely be crying out for Lemtrada (as I would have been two years past Dx ) – and who knows, perhaps I will go on to have it regardless of possible effects.

Good luck with the Tysabri – I hope it is as good for you as it was for me.
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Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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