Originally Posted by bny806

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!!!

Originally Posted by alice md

First, I am very fortunate to work with an amazing team of people.

Second, people noticed (in fact the head of my department realized something was abnormal before I was ready to admit to myself that I am not just a bit overworked and tired).

Third, explaining this illness to someone who has not experienced it, is nearly impossible. I got used to people thinking that I am depressed (after seeing myself in the mirror I realized why they thought so), anxious (it's very hard not to sound very excited about what you are talking when you can hardly breath while you talk) or even one of my patients asked me why I ran 8 flight of stairs instead of taking the elevator.

Also, people like to have something to talk about, and me and my illness was apparently a very "juicy" topic. Mostly that some of my treating neurologists thought it was just fine to discuss their thoughts and opinions with my colleagues. (They seemed to think that patient confidentiality does not apply when the patient is a physician).

I had times when I would just say that I think I am very sane, considering the fact that I am such a "crazy" person.

I had to learn to deal with remarks such as-some people work and some people have time to relax or do research; I had to accept that some of my accomplishments will not be understood or appreciated. (although, some surprisingly were much more than I have realized).

I had to get used to people criticizing the way I deal with my illness. I had to get used to everyone giving me their advise. (some was useful, but most was-you should have more hobbies, you should exercise more, you need to be more determined etc etc. )

But, I learned to find the core of what was truly important, concentrate on that and mostly ignore the rest. With time, those around me also learned to accept me the way I am and respect the way I have found to live with my illness.