If our wish came true.....: ... - My MSAA Community

My MSAA Community

9,019 members20,711 posts

If our wish came true.....

Shelly36 profile image
19 Replies

multiplesclerosisnewstoday....

Written by
Shelly36 profile image
Shelly36
To view profiles and participate in discussions please or .
19 Replies
kdali profile image
kdali

Clinical trials are said to begin in 2020!

Shelly36 profile image
Shelly36 in reply to kdali

I canwait that long!

jimeka profile image
jimeka

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 🦋 🌈

Shelly36 profile image
Shelly36 in reply to 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?

jimeka profile image
jimeka in reply to Shelly36

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 🦋 🌈 🙏

Shelly36 profile image
Shelly36 in reply to jimeka

Thank you so much! Not to be rude but you are a badass!

erash profile image
erash in reply to jimeka

jimeka purple w/c cool! Did I miss the picture of it? Is there room for your pup to hop aboard? 🐶

angelite profile image
angelite in reply to jimeka

Like this, Jimeka ? It looks great : ) x

rollz.com/motion/?lang=en

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Oh, I wish they could speed up the progress.. The procedure sounds logical to me.

1RiskyRich profile image
1RiskyRich

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.

Shelly36 profile image
Shelly36 in reply to 1RiskyRich

Yeah, they would lose a ton of money but I would think the outcome would be more profitable in the end

nes78 profile image
nes78 in reply to 1RiskyRich

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.

1RiskyRich profile image
1RiskyRich in reply to nes78

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.

nes78 profile image
nes78 in reply to 1RiskyRich

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!

Doubled51 profile image
Doubled51

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.

Shelly36 profile image
Shelly36 in reply to Doubled51

I agree with you. Money makes their world go round

Doubled51 profile image
Doubled51 in reply to Shelly36

Amen.

kdali profile image
kdali

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!

Doubled51 profile image
Doubled51

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.

You may also like...

True Christmas Funny...

Your Bucket List Wishes!

Careful what you wish for

\\"several years ago I was cleaning the attic and Found an old lamp. When I rubbed it, a Genie...

Late Christmas wishes.

Our kids are the fourth one😖