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[Russk (FSHD)]

My name is Russ.  I am new to this site and found it while looking for informaition about the stem cell therapy in China.  Specifically, the Tiantan Puhua Hospital treatment. 

I am 48 years old and a native of Oregon.  I was born with FSH Muscular Dystrophy, along with my twin sister, an older brother and a younger brother.  My mother also dealt with it while she was alive.  I can walk, but slowly, and I use a straight walking stick for extra support.  Cannot climb stairs, and bending over can be tricky.  If I fall I cannot get up without  or at least a chair.  Lifting my arms above my head is possible, but not without effort.  Getting out of a standard chair is a struggle.

I have checked in with the Tiantan Puhua Hospital about stem cell treatment.  They answered a couple of my questions, but not all.  And I have been reading blogs and sending emails, but nobody seems to have informnation about how they are doing now - a year or two after their Beijing treatment.  Does stem cell therapy last?  It seems the more often you do the treatment, the better off you'll be - which makes sense - but how often would I need to come up with that kind of money for treatment.  I work full time as a paralegal, but the money isn't that good!

Can anyone addres this?  Thanks.

Russ

[bettyhelm (MS)]

Hi Russ,

Welcome to our site.  I have MS and was treated in China in May, 2007.  I am still retaining my improvements at this date.  What you are asking is a little hard to answer.  I know that out of the people who had treatments the same time as I did, a few have already returned.  Everyone there had different illnesses/injuries.  I was the only MS patient.  I think if your symptoms come back, another round of treatments puts you back to the previous level.  Different diseases/injuries have different results.  All I know is that it's a personal decision that each person has to make for him/herself.  I got my life back and that is worth everything to me.  I would not hesitate for a minute to go back.  It was a wonderful experience.  This is not a cure, it's a jump start to improve your quality of life. 

There are a few people who have gone to China that are members of this forum.  Check out their experiences.  I wish I personally knew someone who has MD that had undergone the treatment, but I don't.

Good luck,

Betty

P.S.  Forum members -- anyone out there have experience with MD?  If so, please post for Russ.

[Russk (FSHD)]

Thank you, Betty.

I saw your interview on the Beike site.  What a wonderful result for you! 

Yes, there are very few Muscular Dystrophy patients having the treatment for some reason.  I currently have an Australian friend with the same disorder as mine (FSH MD) in treatment in India (her blog: http://claire-anderson-india.blogspot.com/), but it sounds a bit too "third-world" for me.  Spoiled American, I admit.  I just want to make sure the money spent is worth it.  Speaking of which, I see treatment ranges from $20,000 to $45,000, depending on the length of the program, and wonder whether a 30 day program is just as good as a 60 day program.  Did anyone ever research this question?

Russ

[bettyhelm (MS)]

Russ,

I know that two of the people from Baton Rouge had 8-9 stem cell treatments when they were there.  I think the doctors determine if more treatments or a longer time would be beneficial.  The prices range because of the number of treatments.

Sheila said she had answered you.  I  she emailed you directly because I didn't see a post.  Did you get an email from her?

Betty

[Russk (FSHD)]

Betty,

Sheila tried twice to email me. However, I ony received my original message.


Russ