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Member
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Join Date: Apr 2009
Location: Tenn
Posts: 554
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Member
Join Date: Apr 2009
Location: Tenn
Posts: 554
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Quote:
Originally Posted by gonslo45
For me this is very important as if my 4th lead implant does not work I am deemed to have a terminal illness as there is no other therapy available as I am already on optimum medication for my heart.
I have now discovered that treatments for MG are being used to treat DCM with a high degree of success. I assume you all have heard of plasmaspherisis and immuno adsorbtion.UNfortunately at the moment this treatment for DCM is not registered with the UK equivalent of the US FDA. THerefore it is not available. I am hping i will be given it for MG and may therfore, "kill two birds with one stone".
Would br interested in comments from those of you who have had this treatment for MG.
Best regards.
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I've had plasmapheresis (PEX for short). It was rough for me -- I "died". I'm not sure that you could handle it with your heart condition. I don't know what you mean about immuno adsorbtion -- might it be the same as IVIG?? I've had IVIG -- Intra Venous Immuno Globulin -- another common treatment (here in the US) for MG. I couldn't handle that either -- but, many, many MGers seem to have few, if any, problems with IVIG.
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~jana
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