NeuroTalk Support Groups - Inversion or other alternative treatments

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Inversion or other alternative treatments (https://www.neurotalk.org/myasthenia-gravis/238164-inversion-alternative-treatments.html)

Quote:

Originally Posted by AnnieB3 (Post 1218341)

Patrick, I don't believe anyone here is denying that vitamin D is essential for good health. Mrs. D addressed that quite thoroughly in response to your vitamin D thread.

Annie

Yes, cures rickets, for sure...

Hi guys,

After trying multiple drugs and over 70 plus PlasmaPherisis, RITUXAN this coming September I'm probably going to be undergoing a STEM CELL transplant... they've done 8 patients so far with great success, no more meds nor need for PlasmaPherisis!!!!😂😂😂

I just have to talk myself into it... they're are risks but I think they're well worth it!!!

Quote:

Originally Posted by Snoel (Post 1218419)

Hi guys,

After trying multiple drugs and over 70 plus PlasmaPherisis, RITUXAN this coming September I'm probably going to be undergoing a STEM CELL transplant... they've done 8 patients so far with great success, no more meds nor need for PlasmaPherisis!!!!��

I just have to talk myself into it... they're are risks but I think they're well worth it!!!

Certainly wish you the very best, which ever way you decide... Will your insurance pay for a stem cell transplant for MG...? .......p

I'm Canadian YES it's covered under our Government med plan...

Quote:

Originally Posted by Snoel (Post 1218438)

I'm Canadian YES it's covered under our Government med plan...

That is a good thing!!

I've tried a lot. One tends to do that when desperate enough.
However, only prednisone, ivig and bipap help me survive the day.

I say survive because I still struggle every day.

Quote:

Originally Posted by Ravenclaw (Post 1218487)

I've tried a lot. One tends to do that when desperate enough.
However, only prednisone, ivig and bipap help me survive the day.

I say survive because I still struggle every day.

I'm willing to chance , I'm to young to keep taking Imuran for a undetermined amount of time ... I say it's more dangerous to stay on Imuran than doing a Stem Cell our hospital has 8 patients done with 100% success rate, they use your own stems so the risks are lessened by a WHOLE lot.

Quote:

Originally Posted by Snoel (Post 1218567)

Sometimes you do not have a chance.
I was 19 when I was started on prednisone, imuran etc. Tried cellcept, mtx and many more. I am not even 30 and thanks to my longterm prednisone us I have other health problems too. Tbh, I'd rather face longterm imuran risks than what I am facing now.

Quote:

Originally Posted by Snoel (Post 1218419)

this coming September I'm probably going to be undergoing a STEM CELL transplant... they've done 8 patients so far with great success

Snoel, I don't live with MG but immunology and cell biology are among my interests.

Out of curiosity, which kind of stem cells are being considered for you - there are many different kinds of stem cells, all with different biological properties?

Quote:

Originally Posted by kiwi33 (Post 1218615)

Listen I'm no doctor....long story short is that they medicate me to over produce STEM CELLS and once they have reached there goal they collect them same way as PlasmaPherisis same machine bit takes much longer 6 to 8h once done they freeze them...

Now the tough part CHEMOTHERAPY start's to KILL your immune system! this can vary for the time length of treatment, again once they reach a certain point they STOP the chemo treatment then reinfuse the stems cells they had earlier collected from you and restart your immune system or reboots it to a fresh start... Meaning having to re do all your vaccines bla bla bla.

All the above all done in stages and I'm sure I'm missing out on some details but it's an overview, like I said I'm no doctor but if. I do go ahead with it I'll try to fill you guys in with the progress and bump's in the road😉