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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-22-2008, 09:23 AM | #1 | |||
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Senior Member
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Hey everyone! I hope you are all doing well! Know that you are all in my thoughts and prayers! I'm going in for plasmaphoresis today (not fun).....I've been feeling a little rough lately, so my neuro and hemo decided that this was the better alternative...........I'll get my "make ready" and come out feeling a lot better, and for that I'm grateful, though I must admit I'm scared out of my mind (hate needles) - they are starting a PICC line today, and I"m going to be treated at the Cancer Care Centers, so I know I'll be in good hands - my GP (who, by the way is the best) said that this is going to make me feel even better than the IV IG, so I'm pumped about that, but really don't know what to expect, so for those of you out there that have had it (and didn't have a horrible experience) can you fill me in? Am I going to have to lie there for hours? What's it like? I figure knowledge is power, and I'd like to go in knowing something..............I just want to thankall of you for being so supportive - you've made all the difference to me! WEll, I'm going to go pack now, but hopefully will be home tonight (they may admit me for a few days), but if they do, I'll bring my laptop. I figure I may as well make my room as comfy as possible, though all the nurses laugh at me when they see my big bag............Take care all, and please pray for me! If I am unable to email for a while, know that I am thinking of all of you eeyore, redtail, sniffvhide, Hiho, NancyLee, ALL OF YOU and am praying for your remission!!!!!!!!
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07-22-2008, 10:20 AM | #2 | |||
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Wise Elder
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I am sending up a prayer for you right now. I hope you get to come home tonight but if not I hope your home soon and this treatment works miracles.
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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07-22-2008, 01:42 PM | #3 | ||
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New Member
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Hey! I hope your treatment goes well for you. Once again, I have another question. What is plasmaphoresis? What symptoms of MG do you have now?
I will be thinking of you! God will give you courage and it all will be okay! |
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07-22-2008, 02:29 PM | #4 | |||
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Wise Elder
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Alissa, it's a procedure where they take small amounts of one's blood and cycle/separate it. The red cells and plasma are separated. The red cells are cycled back in and the patient's plasma is replaced with frozen plasma.
This procedure is supposed to help slow the affect mg has on the muscles. It's not a cure, but a treatment for relief. Here's links to a more in depth definition: Plasmapheresis for MG and Plasmapheresis in detail PS: My mom and sister live close to you. Sis is in Huntsville and mom is in Fayetteville.
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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08-02-2008, 09:24 PM | #5 | |||
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Senior Member
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Plasmaphoresis is the process of SLOWLY removing your blood from your body and removing the plasma - taking out all of the bad antibodies - and recirculating the blood back in - in essence "cleaning" your blood. I had a "line" placed in my jugular - that really scared me I'm a BIG baby!) I was in the hospital getting that done for 5 days and then 4 days of IV IG. I still feel rough, but know it will get better I'm still very weak - can barely get off the sofa, but I can walk, talk, eat and swallow - something that I wasn't able to do before. I'm on 40 mg of prednisone and 1000 mg of cellcept and 480 mg of mestinon just to get around, but that is MUCH better than what I was on before.When you get a chance, drop me a line and let me know how you are doing Erin
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