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Old 05-28-2017, 01:27 AM #3
anon6618
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anon6618
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Wow Annie, thank you so much for your answer!

Tbh, a little while ago I almost gave up.
But luckily I still have hope, so I'll keep fighting. I still believe I'll get a good working treatment soon. To just move, walk, do, breath effortlessly, I really just want to be able to stand straight and feel normal. Like a human being.


I have seen an Immunologist (and so many specialists have seen my case), as I have multiple illnesses.
Though of all the things I have; MG is my worst one, because it's mostly my trunk, eating and breathing muscles, so that leaves me bedbound this much. Don't worry, I am stable, and I have been worse, but I still can't do as much as I would like. My QoL is indeed not quite as good as I would like.

It's is said to be some kind of interaction between multiple diseases, and I believe my longterm high dose prednisone isn't helping much. I'm on prednisone, weekly ivig and cellcept (immune system stuff, I use many more).

I have never tried Rituximab, but I wrote it down to talk about with my neurologist when I see her. I also want to talk about cyclosporine A and cyclophosohamide (though the 3 scare the heck outta me )
LDN isn't an option I thought, because I still use high dose prednisone.

I wanted to know more about Th1 and Th2 because I want to try CBD (Cannabidiol = a non psychoactive compound in cannabis, legal in many places). I have read a lot about it, and as far as I understand it can be immunomodulating, and it is said to shift the immune response from Th1 to Th2. Which is good in diseases like auto immune R.A. or Diabetes 1, since that's caused by something in Th1.
But, I can't seem to find information about the role of Th1 or Th2 in MG.

My immune system is tested, but I have some false positives / negatives now because of my frequent high dose IvIg.

Thank you so much, your message is enough help, just you thinking along warms my heart!!


Last edited by anon6618; 05-28-2017 at 01:51 AM.
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"Thanks for this!" says:
AnnieB3 (05-28-2017)
 

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