Potential Mylin Repair! : Researchers at... - My MSAA Community

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Potential Mylin Repair!

Raingrrl profile image
26 Replies

Researchers at OHSU have developed a compound that stimulates repair of the protective sheath that covers nerve cells in the brain and spinal cord. This exciting news could mean reversal of the damage caused by MS. It still needs to undergo clinical trials however.

Here is a link for more info: news.ohsu.edu/2019/04/18/st...

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Raingrrl profile image
Raingrrl
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26 Replies
RoyceNewton profile image
RoyceNewton

hmm how do I volunteer to be a guinea pig?

Peruzzot profile image
Peruzzot in reply toRoyceNewton

I'll be right there with you.

Raingrrl profile image
Raingrrl in reply toRoyceNewton

Doesn’t seem like they have even designed a clinical trial just yet. The NMSS is one of the organizations that are funding the research. So maybe through them? I thought about looking into it more but decided it would likely not be worth my time because I’m over the usual upper end of the age range for most clinical trials.

RoyceNewton profile image
RoyceNewton in reply toRaingrrl

I might just look into it, though I am usually ineligible. Not enough relapses.

jimeka profile image
jimeka

Let’s hope and pray that they can. Thank you for the article, Blessings Jimeka ✝️

Peruzzot profile image
Peruzzot

This would be awesome if we could get all we've lost back to 100%.

RoseySawyer profile image
RoseySawyer

I just need the nerves that control my pee to be repaired. 😊❤🌷

kycmary profile image
kycmary in reply toRoseySawyer

Me too Rosey!! but I think it's muscles.

RoseySawyer profile image
RoseySawyer in reply tokycmary

I think it's the muscles to but the nerves control it all. And of course since I was paralyzed back in 2015/16 for a couple of months, my body has not fully recovered. I don't think my nerves will fully recover. But hey atleast I'm walking again and pee pads are totally doable. I do have good days sometimes that I can control my bladder but that's ONLY sometimes. 😊❤🌷

kycmary profile image
kycmary in reply toRoseySawyer

been using bladder pads for a few yrs now I'm scared of having surgery as I do have days 3/4 a week some times that I don't have any problems with my bladder. I'm hoping Ocrevus will help more, I get my next dose June 4th. so we will see what happens.

janetb1968 profile image
janetb1968

Wow! Amazing news fingers crossed xxxx 😎😎😎

Buddy2009 profile image
Buddy2009

Sounds like some Great News !

rjoneslaw profile image
rjoneslaw

can wait 2 hear the trial findings

Juliew19673 profile image
Juliew19673

My Sister sent me a link last night on this, very exciting! Doubly as I'm from Oregon and still have family in Portland.

How does one go about becoming a Guinea Pig? After having been DXED with MS for a whopping year, I'm ready to try ANYTHING! I'm guessing 1st would be talking with my Neurologist...

Raingrrl profile image
Raingrrl in reply toJuliew19673

Talking to your neuro would be a good start. Since you are in Oregon, I’d be surprised if your neuro hadn’t heard of the study. It was on every major media outlet here in the Seattle area. I’d love to be a guinea pig too but, like I said up thread, I’m probably outside any trial upper age limit.

Juliew19673 profile image
Juliew19673 in reply toRaingrrl

I'm actually in Los Angeles, but my family is in Oregon and I did grow up there. I did email my Neurologist but have not heard back yet.

Raingrrl profile image
Raingrrl in reply toJuliew19673

Oops...misread your earlier reply. I was thinking you were lucky to be in Portland home of OHSU that is developing the med.

Juliew19673 profile image
Juliew19673 in reply toRaingrrl

I could be there, haven't heard back from my Neurologist yet... Thanks for your help Raingrr!

IFwczs profile image
IFwczs

I am reading this astounding book "Healing Multiple Sclerosis" by Ann Boroch, and, it turns out, we can rebuild our myelin sheath ourselves by omega-3 (fish oil) and omega-6 (evening primrose oil) as well as EAP (ethanol-amino-phosphoric acid). It is much safer than being a guinea pig in a trial. I am going to ask my PCP about that.

carolek572 profile image
carolek572CommunityAmbassador in reply toIFwczs

Interesting. Let us know what your PCP says, okay? :-D

IFwczs profile image
IFwczs in reply tocarolek572

I am still trying to figure out the whole candida issue. She told me I've been exposed to yeast, and now I have to take another test. So I probably won't see my PCP till September.

carolek572 profile image
carolek572CommunityAmbassador in reply toIFwczs

Wow, you certainly have a lot to deal with. Candida is something that we are prone to due to our weakened immune system.

Be Strong,

Carole :-D

IFwczs profile image
IFwczs in reply tocarolek572

Thank you, Carole. I would not have known about Candida in MS patients if not for the miraculous book I wrote about the other day, "Healing Multiple Sclerosis." Irina

carolek572 profile image
carolek572CommunityAmbassador in reply toIFwczs

Irina, my response was the extent of my knowledge on Candida. All I know is with our weakened immune system because of the DMTs that we are on for 'ms', we are susceptible to everything. I will look into this book 'Healing Multiple Sclerosis', though

Keep Smiling,

Carole :-D

kycmary profile image
kycmary

I would be too old also. shucks

janetb1968 profile image
janetb1968

I’m in England so probably a big NO! Shucks! 🙄🙄🙄🙄🙄🙄🙄🙄

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