Quote:
Originally Posted by GrannyJo4
Thank you Stellatum,
For your post, understand and good advise. I will get that 2nd opinion afterall.
My Neuro seems afraid to send anyone for plasmapheresis. I asked him why he didn't send me for plasmapheresis instead of a third rescue of I.V.I.G. since the first two rescues didn't work. He said the I.V.I.G. was just easier to take. Thats when I told him it wasen't easier then having to have and live with a feeding tube. He said both treatments are considered the same in some testing so he went with what would be easier on me.
It just dosen't make sense to me. I often wonder if he would have done the plasmapheresis first instead of the I.V.I.G. it would have stopped the swallowing from getting this bad.
Whats done is done. I will try a 2nd opinion and get some fresh ideas.
My neuro nurse said that she felt that Yes I have M.G. and it went into swallowing crisis, but now she feels it put a bad fear in me to swallow and choke.
It's all very confusing.
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I'm glad you're getting a second opinion because I don't like the fact that your Neuro wanted to go with the "easier" treatment instead of trying to find what would work to help you get relief from your MG symptoms. Plasmapheresis was used to treat MG before IVIG came along. Fortunately for me IVIG works but there are others which don't get relief from IVIG and plasmapheresis works for them. Thats why MG is called the snowflake disease. It can be very individualized and what works for one person may not work for another.
I'm so sorry to hear that you are having such difficulty with swallowing and hope that with this new Neuro will come new treatments to help you get better.
My thoughts and prayers are with you.
Shari