PROVE IT OR SHUT UP: So I get this email... - My MSAA Community

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PROVE IT OR SHUT UP

1RiskyRich profile image
28 Replies

So I get this email stating:

The goal of this community is to help patients to find the best resources about the health care. At HealthWeb Navigator, we evaluate healthcare websites...

I say prove it! HSCT has no side effects & a mortality rate LESS than any DMD available. I did it now it's time to make it available to the masses!

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1RiskyRich profile image
1RiskyRich
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28 Replies
CalfeeChick profile image
CalfeeChickCommunityAmbassador

I'm so ready! Still don't have a precise DX. Sounds like you are still feeling great, happy for you.

1RiskyRich profile image
1RiskyRich in reply toCalfeeChick

I am back to about 97% of myself to what I was Pre-MS. Even started working again.

jimeka profile image
jimeka in reply to1RiskyRich

Where did you have the procedure done. Sorry if you have already told us, blessings Jimeka 🦋 🌈

Sandydemop profile image
Sandydemop in reply to1RiskyRich

Sorry I'm late to the party. What procedure did you have?

1RiskyRich profile image
1RiskyRich in reply toSandydemop

HSCT. I was transplanted on May 8th, 2016

Sandydemop profile image
Sandydemop in reply to1RiskyRich

What is hsct?

1RiskyRich profile image
1RiskyRich in reply toSandydemop

Hematopoietic Stem Cell Transplantation

Reply

Sandydemop profile image
Sandydemop in reply to1RiskyRich

Thanks for translating. How are you now?

1RiskyRich profile image
1RiskyRich in reply toSandydemop

Life and the quality of it is priceless. It puts hope where there was none. Best decision ever!

Sandydemop profile image
Sandydemop in reply to1RiskyRich

Hey Rich, really happy for you.

1RiskyRich profile image
1RiskyRich

I did it with Dr. Ruiz so Clinica Ruiz in Puebla, Mexico. There are other places. Dr. Burt in Chicago, Illinois does it off trial basis., but he was $180,000

jimeka profile image
jimeka in reply to1RiskyRich

Thank you. I am really pleased that it has worked for you, it was obviously a wise investment, 🌈 🦋

greaterexp profile image
greaterexp

I hope we hear more about the procedure soon and that it's accepted as a treatment option by insurance.

1RiskyRich profile image
1RiskyRich in reply togreaterexp

It will be available in 2022. That's 5 years. The wait time will probably be another 3 years. Wow 8 years! It's approved in Russia & the have a 3 year wait.

greaterexp profile image
greaterexp in reply to1RiskyRich

I'm thrilled you had a great response. I've read of varying degrees of improvement following the procedure.

Do you requires any medicines related to MS? I've forgotten when you had your procedure done.

1RiskyRich profile image
1RiskyRich in reply togreaterexp

I take no MS medicines. After the procedure I took Bactrim (antibacteria) and Aclovir (antiviral) for 6 months. I also opted to have 100mg of Rituxan as an infusion 5 times (these are optional) just to make sure all the bad B & T cells are gone.

greaterexp profile image
greaterexp in reply to1RiskyRich

1RiskyRich ,

Would you feel comfortable sharing what your costs were? At 57, I feel I'm too old to justify the huge expense, but others who are younger may feel it's worth it. Besides, I have about a ten-word vocabulary in Spanish, and one in Russian!

1RiskyRich profile image
1RiskyRich in reply togreaterexp

At all the facilities they speak English. Most have a section for international patients. Mexico was $54,500 all out-patient which included an upscale 2 bedroom 2 bath condo, all transportationand food while one was in a certain stage.

Russia is $49,000 and all in a hospital.

India is $35,000. I didn't do much reassert on them.

Israel is $125,000.

Germany is $80,000

Their wait times vary. Russia is a 3 year wait, Mexico is a 1 year wait. Germany is about 2 years.

I hope this helps. Some places do seem expensive. But I wieghed the pros and cons & am really looking forward to standing unassisted at the alter when my son says I do.

greaterexp profile image
greaterexp in reply to1RiskyRich

Thank you for letting us know.

1RiskyRich profile image
1RiskyRich

I forgot to mention that I held fundraisers for the full cost. Unfortunately, I didn't have the funds under my pillow.

RoyceNewton profile image
RoyceNewton

OK, I will admit my ignorance. What is HSCT?

Royce

1RiskyRich profile image
1RiskyRich in reply toRoyceNewton

Hematopoietic Stem Cell Transplantation

RoyceNewton profile image
RoyceNewton in reply to1RiskyRich

o ok thanks, does it repair the underlying disease or just mask the symptoms for a period?

royce

1RiskyRich profile image
1RiskyRich in reply toRoyceNewton

It kills the underlying disease. It reboots your immune system from scratch. I had to redo a few vaccinations. Healing of ones present symptoms all depends on the person and on - is the damage repairable or not. I cant wait for the remylenation (not sure on that spelling). I'll take any help that will speed up any recovery.

RoyceNewton profile image
RoyceNewton in reply to1RiskyRich

good lick mate

Fancy1959 profile image
Fancy1959

1RiskyRich, it's Fancy1959 and it's been a long time since we've last spoke. I am glad your back and that your brought your passionate views of stem cell therapy with you. 🤗 It sounds like your positive and great response you had from undergoing your stem cell therapy is ongoing! I am so very happy for you! 😊 I switched neurologist since we've last spoken, and my initial visit last month, I did ask him the benefits of stem cell therapy and if it was a viable option for me.

He felt it was extremely promising, but wanted to see more research done on it first. To be honest, even if he had recommended it, financially, with 2 sons in college we are strapped. I hate to put a price tag on my health and my future but the cold hard facts is that an $50,000 to $120,00, plus travel expenses, with no guarentee of improvement in your condition, is simply out of our reach. (Yet another reason I would love to win the lottery!) So it seems I am caught in a catch 22, or should I say a catch with $50,022!😦😤😲

1RiskyRich profile image
1RiskyRich in reply toFancy1959

I understand. I am there too. Two kids in college and out of state. A 21 and 23 year old. They cost a fortune. It looks like the older they get the more they cost! May 8th will be a great day. My oldest graduates then only one to go. I had to fundraise for thee Funds cause I didn't have it. The odds are the odds. Over 90% chance of halting the disease an 88% of those see see symptoms reversal. MS has to do with the B and T Cells, ask any Nuerologist. Those cells reside in the blood. Why give MS to a Nuerologist? They are nerve doctors. They can onlyslow it down and handle the symptoms. A combination with a Hematologist would be much better. That's probably why the closest doctors to a cure are Hematologist. Not Nuerologist.

Fancy1959 profile image
Fancy1959

1RiskyRich, what you said makes a lot of sense. Your passion and first-hand experience can add a lot to this chat room. I missed your input and your bright mind! Glad you are back! Fancy1959.

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