Member
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Join Date: Nov 2011
Posts: 576
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Member
Join Date: Nov 2011
Posts: 576
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Hi Kathie- welcome, but sorry you have to be here!!!
I do not have a diagnosis of MG, but have been diagnosed with CIDP.. however my symptoms more resemble MG.. (droopy eyes, difficulty swallowing, breathing, walking you name it).. I started getting sick after I had an IUD placed and perforated.. I never seemed to recover and just got worse.. reading about your surgery, I think that trauma to the body (surgery, illness, stress) can trigger these autoimmune issues to show their ugly faces!
It has been about 16-17 months since I started getting sick.. i did have to see many many dr's - pcp, neuros, rheumatologists etc etc .. some thought I was just "a tired working Mom" - UUGGH.. others thought something was wrong but just said "huh, well interesting" - ha not something a patient ever really wants to hear!!
I finally ended up getting worse and worse and got admitted, I could barely move or breath, couldn't make a smile face or anything.. that's when they started IVIG.. at that time I had no definitive diagnosis.. '
It's so important to find a dr that will listen to you.. some dr's thought since I wasn't dragging a leg I was fine.. but i knew something was awfully wrong and couldnt' even hold a fork or a crayon to color with my kids... - thats not fine!!!
I worked throughout it all too... when I got admitted I had to take about 6 weeks off.. I worked about 3 months where I thought I was gonna kill over.. the week before I got admitted I coudln't stand up straight, swing my arms when I walked or hold them up to a computer.. There was no keeping secrets at that point.. Most people are going to just be concerned more than judgmental...After the 2nd round of IVIG I was back to new, it was amazing, and I didn't stop smiling (something I couldn't do for months) for at least 2 weeks!!
The limbo diagnostic period is defintely the hardest part I think... I was terrified I had something terminal.. I would still be over the moon for one test to come back positive so there would be no more doubt in my mind.. however the meds are working, and that's what matters the most!
Good luck to you!!!
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