52 Ron

[52ron]

Hi, I was diagnosed 47 years ago and I'm very lucky. I've been in remission for 40 of those years. I know what it does to me, but people meeting me have no idea. I have been on Copaxone for the last 17 years.

[greaterexp]

52ron ,

Welcome! You're quite a veteran in the MS world! It's amazing that you had so many years of remission. That's a long time to be on the same medicine, too.

[52ron in reply to greaterexp]

I'm very lucky.

[ddeadred]

Lucky YOU!!! 30 veteran here and I'm still walking even though the MonSter really started beating on me after I turned 50... Many problems started after I turned 50... Just ROCK ON and keep on keeping on no matter what comes...Never give up, never give in!!!

[52ron in reply to ddeadred]

Keep going and think about what you can do not what you can't. Be positive.

[MarkUpnorth]

Wow! I thought I was lucky as I've not had a relapse in ???? well over 5 years. My neurologist just told me that that's not that unusual as you get older. I stopped my DMT's which included Copaxone and several others the 20 years or so of taking DMT's, but still left with all those "gifts" from MS that stuck. I'm glad to hear, as others still going through the relapsing remitting should too, that maybe there is an end. I'm hearing more and more about as my neurologist just told me about the possibilities of high dose biotin (vitamin K) to try and reverse what's accumulated. Since my battle wounds are significant, but at least visually only the cane for balance, I'm somewhat active, I do at least 10K (steps) each day, again there is so much that others won't see, unless you possibly notice me racing to the next restroom. Just started the high dose biotin for a month now, so can't report on it. But I'm hopeful there may be a way to get rid of, or at least reduce some of those "gifts" we've accumulated.

[Pbargal in reply to MarkUpnorth]

WOW! It excites me to hear your story. I'm in remission now and have been for a year. How long have you been off the DMT's? I've been worried about the time when I have to go on medicare and will no longer be able to take the DMT's because of cost. When your on medicare the drug companies can no longer give you assistance and as we all know they are all VERY expensive. I'm also interested in the biotin (vitamin k), how large a dose are they saying. This is the first time I've heard about any possibility of reversal.

Please keep us updated on your progress.

Reply

[52ron in reply to Pbargal]

I stood take Copaxone though I am on Medicare.I do take 100 mgs of Biotin as well as 3000mgs of D.

[Pbargal]

WOW! It excites me to hear your story. I'm in remission now and have been for a year. How long have you been off the DMT's? I've been worried about the time when I have to go on medicare and will no longer be able to take the DMT's because of cost. When your on medicare the drug companies can no longer give you assistance and as we all know they are all VERY expensive. I'm also interested in the biotin (vitamin k), how large a dose are they saying. This is the first time I've heard about any possibility of reversal.

Please keep us updated on your progress.

[52ron in reply to Pbargal]

DMT's?

[Pbargal in reply to 52ron]

disease modifying treatments

[52ron in reply to Pbargal]

Thanks.

[MarkUpnorth in reply to Pbargal]

I've been off DMT's for 6 years now? When I did go off, I had a war chest of drugs, which now I realize were all for fighting symptoms of the drugs. Like a house of cards, I was able to quit one, then another, and another.... . Now I take only vitamins! And doing great compared to all the years on DMT's. Okay, there is one script, the medical cannabis for the evening burning feet. It's a long story, but for all the scripts for the pain which was so bad it kept me awake nearly all night even though I was sleep deprived big time, none of many scripts worked, but the CBD did! After years and years of suffering! Vaping CBD is essentially instantaneous relief. One of my Neuro's for many years, used to tell me that the only drug that works right away was an antacid. His response for the years of failed drugs prescribed. I do have to credit him for not getting me hooked on opioids!. If I ever see him again I will have to inform him of another, just to rub it in for the years and years of pain.

The high dose biotin is 100 mg / 100,000 mcg , which is the only dose I see it in. It typically needs to come from a formulary pharmacy, or on-line, which is where I've gotten it. I've got a script, but it was not needed on-line. There are several on-line, all the same dose. My Neuro and nearly all the studies I read, etc., are 1 tablet 3x daily.

[bxrmom]

52ron Wow, remission for 40 years is great!! I was diagnosed in 2006 and was constantly having relapses. I have been in remission from my last (and worst) relapse in 2008 after having the flu and not getting a flu shot because non of my doctors told me it was a crucial thing to have done and I had not read anything online about it. Now I get my flu shot routinely when they are available.

Jessie

[52ron in reply to bxrmom]

I was told it was crucial to get the flu shot every year.

[kdali]

Awesome! Glad to know someone who has stayed on Copaxone over 10 years, with success 🎉

[52ron in reply to kdali]

It seems to work for me.

[jackiesj]

I am not understanding what the vitamin k does for a person with MS.Does it get rid of lesions or left over symptoms of meds, not sure what is meant.Want to learn more.

[52ron in reply to jackiesj]

I don't know anything about vitamin K.

[MarkUpnorth in reply to jackiesj]

I have no clue. What I read on line, I didn't see any explanations. They probably don't really know, but I'm sure someone will say it does something to allow your body to repair itself. Seems like the jargon all these cures like Wahls', xxx, & xxx.

Wish it would fix my memory! It's running at a snail's pace these days. Please!

[52ron in reply to MarkUpnorth]

I have problems with short term memory.

[Amore55]

52ron I am so happy to hear your experience, I think it gives all of us tremendous hope. Thank you for sharing. Please let us know how things go on your new supplement. Thanks! Kelly 🙂