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#1 | ||
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New Member
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Hello
My name is Carmel Turner. I was the first female in australia to have AHSCT Beam conditioning treatment for Multiple Sclerosis., this treatment is currently available in Australia. There is a lot of scams around MS stem cell treatments that i would like to help others to avoid. I also would like to help others to talk to thier neurologist as equals rather than be spoken to as a child. If you have any questions please post and i will come back and answer them to the best of my ability. Carmel Turner |
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"Thanks for this!" says: | SallyC (04-23-2011) |
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#2 | |||
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Senior Member
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I do not know anything about this...can you explain a little more and say how you are feeling?
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"Thanks for this!" says: | SallyC (04-23-2011) |
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#3 | ||
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New Member
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thanks for bearing with me Aarcyn*
**edit My name is carmel turner i have received AHSCT treatment for MS. This procedure is covered under medicare (my total costs were $800). It involves chemo therapy to totally destroy the immunity system and from previously harvested stem cells....regrow your new bone marrow from scratch. In doing this my immunity system was effectively rebooted. As you can imagine the treatment was very intense. This is nothing like the procedure that you get from scam operators in europe/china/south America I can though say that before treatment i was constantly declining from a very aggressive form of MS. I was only diagnosed for 3 years and was already in a wheel chair after having an attack every 6 weeks until treatment. Since november last year i have not had one attack. I no longer in pain 24/7. I no longer have any issue with heat. I was unable to take one step without holding onto a four wheeler walker , i now can walk about 1km without aid. even if it is a slow stumble it is still brings me to tears just to walk with my daughter to the local park. **edit Carmel turner* Last edited by Koala77; 04-23-2011 at 03:36 AM. Reason: ** As per NeuroTalk guidelines |
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#4 | |||
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Grand Magnate
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This sounds like Hy/Cy which the do/did at Johns Hopkins in Maryland. Red Penguins had it. Is it? I don't know. I don't know if Stem CDells were part of it.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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#5 | |||
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Grand Magnate
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Ave8ergirl was Clinical Trialing Revimmune but I do not think it was successful for her. Dr Douglas Kerr was active in HY/Cy at Johns Hopkins and Revimmune but he is no longer at JH. Last I could find was a newspaper article on HY/CY at JH by Dr. Kaplan from 2009, but I have no idea of anything afterwards. Hy/Cy is a really hard one, the Chemo makes you sick, can make all your hair fall out and lower your immune system. I'm not sure there were consistent, long lasting results. I'm always hopeful about MS treatments but not very convinced, but PPMS seems very different from RR and not receptive to treatments. I tried Novantrone (another chemo) but all it did was make me throw up.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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#6 | |||
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In Remembrance
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Congrats, Carmel, I hope you keep improving. Please keep us informed..
![]() Where is Red Penguin? I wish she'd check in and let us know how she's doing. Haven't heard from her since her new baby was born. I hope no news is good news. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Lady (04-25-2011) |
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#7 | |||
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Grand Magnate
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Babies do take your time. Mine is 19 qnd home for Easter. Food, towels and other needs are constant. I'm getting tired, I'd forgotten how kids around was like. He brought other ones here too!
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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#8 | ||
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Junior Member
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Glad to hear you are feeling better.
After seeing my sister go through chemo for leukemia it would take a lot of convincing to get me to do it! |
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#9 | |||
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Senior Member
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_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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#10 | ||
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Member
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Well, in my case, the myasthenia symptoms had become relentless, and my quality of life was approaching zero, despite using several heavy hitting drugs. The chemo was a walk in the park compared to the constant MG (and I had a tough time with chemo, including complications).
I had 6 weeks of pretty much feeling like poo, and then...blessed relief from all that had ailed me. I'm almost 6 mos out now, and am leading a pretty much normal life. Worth every twinge of nausea I felt! I'm currently emailing with a woman who had a SCT for MS a couple of months ago, and she's now past the "feeling like poo" stage. She's out and about and caring for her small sons again. It's really amazing. |
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"Thanks for this!" says: | SallyC (04-26-2011) |
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