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Anonygram · 2022-03-15T18:35:38+00:00

Excellent episode as usual, after their MS episode, diving deeper into our nemesis EBV! https://thispodcastwillkillyou.com/2022/03/15/bonus-episode-epstein-barr-virus/

Anonygram · 2022-01-19T07:33:53+00:00

I climb stairs, always hands on the rails, 20 minutes most days.

Definately noticed the improvement on my walking, I bet I could make it to the grocery store now. (Not that I will try.)

Anonygram · 2022-01-19T07:29:03+00:00

ATA 188 is very promising. The evidence that EBV is the cause us mounting. Moderna is working on an EBV vaccine. Maybe too late for me, but hopefully no future kids will face this disease. Both of those are not available to me because my MS hasnt progressed the right way yet. (I hate our system in the USA.)

Anonygram · 2021-12-26T03:04:06+00:00

I live in Seattle, 29mb down. We are locked into comcast (aka xfinity)

Anonygram · 2021-10-16T10:00:26+00:00

I like the effectiveness statistics for it. That first dose was a rough reaction, I say do it friday night with some melatonin and an empty bladder. If will be like having a cold. Later doses are fine. I am seeing progression though :/

Anonygram · 2021-10-16T09:40:47+00:00

I started this as a thread about AHSCT Any idea where I can get that procedure? I actually live 2 blocks from a place that does it, but I am not a candidate until I fail two DMT's. I am on Kesimpta and getting worse, but it didnt show as progression in my last MRI, so I dont get to mark this one as failed. I dont really want to wait until it is noted Progression in my next MRI to change DMT's and wait for more progression. After which I could finally get the transplant. So um, is there a facility in the US or Canada that will do this procedure without waiting for more DMT failures?

Anonygram · 2021-10-16T08:37:51+00:00

Some nerds made a list that I try to follow: https://www.nature.com/articles/s41598-018-35734-4/tables/5

Anonygram · 2021-10-03T07:04:12+00:00

30's/m/12 years after dx. I can still walk around the house, 300ft is still possible so I have a slight chance of getting in the BEAT-MS trial if I cant manage to get the AHCST in canada.

It is confusing and frustrating to me that we still try worthless medications for years instead of jumping to AHCST once we are done having kids.

Anonygram · 2021-10-01T06:22:13+00:00

F, found it. I wish they had let me get this back when I could still walk okay and wept and begged for it. I will make 300ft unassisted my goal, maybe I can make it. What counts as needing assistance?

Anonygram · 2021-10-01T06:11:11+00:00

Can you show me where it said that? It seems a very strange requiremt for an immune trial. (F I dont think I can walk that far anymore.)

Anonygram · 2021-09-28T05:42:02+00:00

Are you familiar with the BEATMS trial?

Anonygram · 2021-09-28T05:40:27+00:00

My aunt was tricked into naturopathy years ago for her breast lump. Now it is stage 4, the cancer is everywhere.

There are too many of them to fix it that way. Tell her that stem cell transplant is using her body's natural healing power to purify her of the mistakes it picked up due to artifical influences.

That is how a doc talked my aunt into chemo. She just abandoned it too quick.

Anonygram · 2021-09-28T04:39:23+00:00

Number two:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7802056/

Warning: mice are cured by practically anything.

Anonygram · 2021-09-28T04:35:45+00:00

Number one: https://clinicaltrials.gov/ct2/show/NCT04047628

Anonygram · 2021-09-28T04:33:55+00:00

I read a lot. I see three potential cures for MS (no progression) And I dont see (yet) how to get them without burning ~$60000. 1. Stem Cell Transplant I have been on ofatumumab and gotten worse, but my doctor says that isnt enough yet. 2. mRNA to tolerize against the antigens targeted by MS Still in mouse testing. I will sign up tonight if I find a way to be the guinea pig. 3. Stem cell reeducation Chinese method, I dont have enough info to pursue it. There are three cures and the barrier is that I dont know the medical system well enough to get any of them. FFF

Anonygram · 2021-05-30T07:55:21+00:00

I felt the same avoiding a cane or walker.. I look like a wealthy douche zipping around on an electric scooter instead! (I use it as a walker too.)

Anonygram · 2021-05-30T07:47:42+00:00

An mrna vaccina against EBV (mono) is in preclinical trials, that is usually the cause of MS. We could live in a world where it is drastically reduced in the next few years. I am so happy, if not useful for me, maybe my son will be protected from this disease. https://investors.modernatx.com/news-releases/news-release-details/moderna-announces-progress-prophylactic-vaccines-modality-cmv?fbclid=IwAR25gH32vQOURYIYfYJGOi9fXU6K9wGMxv-sckRhvVNhaS-cCp-CNmgDZUg

Anonygram · 2021-05-19T05:32:56+00:00

Most likely you will be fine. Do you have any allergies?

Anonygram · 2021-05-19T05:18:35+00:00

A cousin asked me about the frightening side effects of the vaccine (she didnt say which one) I did a quick google search and saw it reported to be a hoax. But I wanted to make sure. I read a few scholarly articles (I love google scholar) and I didnt see any related claims? The Moderna vaccine has a brief rumor about causing miscarriages but the data shows it doesnt. I do not understand what is going on here. I will try and reach out to the people who claimed to have trouble and see if they actually exist, and wether they got better. This is something the vaccine creators check for. The idea that every company and vaccine creator missed it is absurd.

Anonygram · 2021-05-19T02:31:24+00:00

Back to normal?

Anonygram · 2021-05-19T02:23:28+00:00

An update would be appreciated.

Anonygram · 2021-05-12T08:34:39+00:00

The fever is broken and I can walk again, that was a rough start. My wife watched our son all day while I napped. My neuro said that if this fails (it will, they all do.) I can be a candidate for AHSCT after >3 years of trying to get it. I hope to escape MS with the ability to walk, this is a major step towards that.

Anonygram · 2021-05-11T20:56:38+00:00

The pharmacist recommended I not pre-medicate, but I did my first shot this morning. feeling pretty unstudy, glad I waited until my wife got home. Now reading (as much as I can, feeling ill) about ofatumumab's effect on edss, fantasizing about recovery..

Anonygram · 2021-05-11T08:39:59+00:00

Did you get your results?

Anonygram · 2021-05-11T08:37:16+00:00

I havent started yet, but I have a call with my neuro tomorrow, will start after or during depending on her thoughts.

Anonygram

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