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Does MS burn itself out?

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Posted 5/25/2015 10:03 PM (GMT 0)
Scott,

I don't care if my MS treatment was as stupid as which sock I put on first in the morning--if that treatment was successful for 9+ years, I would not stop it! Why mess with success? What if your next relapse blinds you, or takes away your ability to walk? I guess that would answer the question regarding whether yours has burned out or not, but that would be a hell of a price to pay for the answer. I would reconsider stopping your treatment. If you've been relapse free for 9+ years, don't stop what you're doing now--it's working!!!
Posted 12/4/2015 6:56 PM (GMT 0)
Hello I am new to this Board, I am one of those people with the MS Burn Out label.
I am 52, male, dxed in 89, I started (IFN) 1A < Rebif in 94 as a Trial patient. When I look back over those years I was very sick "Drug Sick" I injected (IFN) for over 18 years. I had been hospitalized I believe 6 times, Solu-Med at least 6 times I discontinued the drug in 2012 because I just couldn't do it anymore. I was tierd of being sick, this was a life changing desion for me.

Life changed & my body basically attacked, I headed into TCM for some idea's on how to look after myself, I headed into Nootropics for the Brain> Lions Mane Mushroom now I am up to 12 grams a day.

At times I feel like an Arthritic old Man. A year after my quitting (IFN) in 2012, I was given the "MS Burnout" label. I still have symptoms sore legs arms bone pain. My eyesight diminished after quitting, I have many Floaters in my eye's now where as I never had them before.

Oh yes abilities, I hadn't been on a Bike since my early 20's, now I am a avid rider, walker, Hiker, you might say I managed to get my life back. I still don't understand what has happened to me. My last Neuro appointment I walked Heal to Toe across the room, I haven't been able to do this since I was in my early 20's

Now I use Clinical THC @ 7 mgs a day, due to the half life of this drug being 2 hours, I spread it throughout the day & as mentioned Lions Mane Mushroom 6 Grams AM/PM

I realize this "Burnout label" is controversial and I been called a lier when I say it.
I am curious to know are there other People out there who have been given this label?

And know I still feel like I have MS, but I consider this MS 2.0
soul
Posted 11/25/2016 9:53 PM (GMT 0)
My sister recently told me about the 'burnout by about age 65' after she was told that by her neuro at the MS Center in Charlotte,NC. She was diagnosed with MS in Oct 1990, (numbness from feet to knees) and I was diagnosed in Oct 1991 after waking up blind in one eye (optic neuritis). I thought I would just google it and see what transpired. Fairly surprised to see how many folks are talking about it-as a possibility and as a 'not possible' situation just on this site.
I've taken Avonex injections since 1994 and so over them! I had one shot left and decided it was going to be my last-that was Nov 7. My original neuro I saw three times and she retired. The guy who took her place is a sleep specialist and a typical visit results in him listing all available drugs out now, and don't I want to try them? No!!! I did try Tecfidera with disastrous results; I was only on it for two weeks. I'm just over putting drugs in my body, and arguing with someone who's supposed to be helping me. I have no exam, ever. Blood work if I mention it. No asking now I am, or how I've been. I think I finally found a neuro group who has a strong possibility of knowing what they're doing, including MS! So, here I go again. God bless all of yall who deal with this wacko dx!!!
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