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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-02-2013, 03:41 AM
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After 5 loooooong years of dealing with this awful disease, my neuro thinks I'm in REMISSION!!!! I'm so happy! Granted, I still have to deal with all of the side effects of the cyclosporine - arthiritis, osteoporosis, brittle bones and the loss of 6 in. heightwise, but I feel so blessed! Oh Lord, the weight! I'm stuck @ 170 lbs, which for a 4'11" woman is HUGE, but with the lower meds, I'm HOPING to lose it, but if not, I'll be fine, so long as I feel like this!
It has been a battle. I've been very, very close to meeting my maker (MRSA was the worst), but I finally see light@ the end of the tunnel!  For a while I will still be getting IGG every month, but it will be tapered off and hopefully I will only be on IGG when I need it! The ONLY positive of having to deal with this is meeting the people here. Everyone has been so amazing, so kind, so hopeful. I don't know what I would have done without it, truly. I have been truly blessed to meet so many wonderful people. *admin edit* I still remember the first time I found this site! It was amazing! People who UNDERSTOOD what I was going through! People who could relate, people who were just as scared as I was; it was awesome! I still log on and read everyone's posts. I'm just quiet now. I hope this post finds all of you happy! I still pray for everyone and hope you have a great day/week/year. Big hugs! Erin 
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Erin . Last edited by Chemar; 03-02-2013 at 07:04 AM. Reason: NeuroTalk Guidelines |
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| "Thanks for this!" says: | AnnieB3 (03-02-2013), anon6618 (03-03-2013), Brain patch (03-06-2013), korbi_doc (03-03-2013), pingpongman (03-02-2013), Quandry (03-02-2013), rach73 (03-02-2013), redtail (03-03-2013), seishin (03-02-2013), Stellatum (03-02-2013) |
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03-02-2013, 04:36 AM
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Quote:
 
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| "Thanks for this!" says: | erinhermes (03-02-2013) |
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03-02-2013, 08:43 AM
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That is great!!!
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Celeste |
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03-02-2013, 08:48 AM
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Brilliant news Erin xx
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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03-02-2013, 01:44 PM
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Erin, I am so happy for you and it gives me hope!
What part of your treatment do you attribute to your remission? kathie |
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03-02-2013, 03:50 PM
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I was out the door therefore quickly answered this post from my gut this morning!
Going into a remission is a really BIG DEAL, Erin! 2 years ago I resigned myself to the fact that I may never again be able to lift my arms to do simple tasks. For whatever reason and for however long a remission may last it is always a reason for celebration. Even one day with symptoms better than the day before is a´miniature´remission worthy of gratitude in my book! I am now in complete remission from 5 years of myasthenic symptoms (and I wont let a pair of deltoids that feel ravaged by a tornado spoil my party! -although some other things almost did) I hope you are able to enjoy this lovely time and that the other symptoms behave themselves accordingly. Take care of yourself at this precious time
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| "Thanks for this!" says: | pingpongman (03-02-2013) |
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03-02-2013, 06:24 PM
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Praise the Lord! Although I am rather new to this site I am extremely happy for you. Thanks for sharing the good news, Erin.
Interested |
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03-02-2013, 10:57 PM
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great news!!!!! so happy for you!!!!
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03-06-2013, 06:18 PM
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Erin, I am curious. Do you feel as good and as strong as you did before MG? Are you back to doing all your pre-MG activites with all your pre-MG stamina?
thanks kathie |
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