If our wish came true.....: ... - My MSAA Community
If our wish came true.....
Hi Shelley36, I do hope that what she is doing proves successful but as always it all depends on money. How are you these days, are you coping ok? Blessings Jimeka 🦋 🌈
I am doing great! I have my car, I'm looking for a new house in Minnesota,I'm starting ocrevous next Wednesday and I'm happy. How are you?
Wow, things are really improving for you. I hope that the new medication works for you and that you have no side affects. So happy things are going well, you deserve to be happy. My PPMS is a slow decline, I finally purchased a purple wheel chair the other day, it's a Rollz wheelchair rollator so I still have my independence but if I tire then my hubby can push me around. It's great how it converts. I am awaiting delivery. Anyway praying that things continue to improve for you, blessings Jimeka 🦋 🌈 🙏
jimeka purple w/c cool! Did I miss the picture of it? Is there room for your pup to hop aboard? 🐶
Oh, I wish they could speed up the progress.. The procedure sounds logical to me.
Funding will be tough. That kind of funds can come from the pharmaceutical companies and I don't think they will fund a cure. That would be like setting themselves up for unemployment. HSCT is the cure. Approved only where pharmaceutical companies MS drugs are not extremely profitable. I wonder why! Check out Dr. Burt's clinical trials for HSCT. Clinicaltrials.gov. Unfortunately it the only way in the USA to have it done, unless you have $180,000 to do it in Chicago. I went abroad for it for a third of that price. Couldn't wait till 2022 for its approval.
Yeah, they would lose a ton of money but I would think the outcome would be more profitable in the end
medicare covered my hsct with dr. burt. and i was treated off study. that was 4 years ago but i do think some people are still getting covered.
Hello. How do you feel? I am only 18 months post. Dr. Burt is having success with getting a few insurances to cover the treatment.
for me the most critical time was the year after hsct. when i left chicago i went directly into inpatient rehab for over a month! that was huge for me - single room, 7 days a week, hours a day - i learned to walk again. pre-hsct my edss was 6.5 - 2 years later it was 3.5. and you would have no idea that i was 35 in a nursing home.
i still can't work and some things have not improved but i'm on a fraction of the drugs i was on, no ms drugs (it's been 4 years now) and significant improvement w. fatigue which i thought was a lost cause! no more pain, spasticity, walker, cane, shower seat, bed rail - all that gone!
Like all diseases it's more profitable to treat instead of cure. I truly believe with all the research and advances in medicine and science there are cures for many diseases like cancer and more. But alas the pharmaceutical industry makes to much money to release to to us that are afflicted with these diseases. But that's just my opinion.
It would be the closest thing anyone has come to so far to a cure. To "cure" someone, you leave them with no evidence of disease. This promises to remyelinate scar tissue, but that won't bring back the tissue lost from T1 holes. Targeted gene therapy has come a long way and may even be ahead of nano therapy by the time this gets going. Who knows when that will be!
I dream and look forward to the day when health comes before profit. I realize profit funds research but the pharmaceutical companies just make to much. Haha. Being on Medicare I'm not even eligible for any $0 copays. But I know they have come so very far in stem cell and such research and am excited about it. I just wish what is available was affordable to us common people. Lol.
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