Was Gaslighting Involved in Your Diagnosis Journey?
Did any health professionals dismiss your symptoms before you finally received the answers that you had an MG diagnosis?
Were you ever told you were making up your symptoms or that it was all in your head?
Did a doctor ever contribute your symptoms to an alternative health issue? Were you referred to another professional because doctors didn't want to deal with you or didn't do proper testing?
How long did this prolong your diagnosis? Were any misdiagnoses a result?
Must be a common thing. The first hospital visit I had they initially thought I was having a stroke. After an MRI they concluded that I had no problem. Then I saw an optometrist about my eye and he said I needed plastic surgery. My physician thought I had Botox and told me it would go away. Another hospital visit resulted in a Mestinon pill which was a temporary fix only with terrible side effects and a suggestion that it was Myasthenia. After thorough testing the diagnosis was confirmed. Months later my symptoms were completely relieved with 200 mg of Azathioprine and 5 mg of Prednisone each day. Five years later still good.
My initial sign was on 11/26/22 & my blood test was confirmed by 12/22/22. I aggressively contacted the doctor's office for any cancellation to squeeze me in. I was so lucky.
I had to have a family member do the same for me (I was struggling to speak) and eventually got an appointment within a week or two I believe it was when other offices were giving me a wait time of a couple months. -Jodi, Team Member
Within 15 minutes of meeting the head of neurology at one of the top facilities in Chicago, they wrote "concern for ALS" at the top of my folder. I had already been researching my symptoms for some time and knew exactly what that such a diagnosis meant. However, the minute ALS was ruled out, I was passed off to a newer neuro who after another year with no definitive answer suggested Cognitive Behavioral Therapy. That was the last time I visited that facility.
Four years later when Seronegative MG was confirmed with a Mestinon trial, I sent an email to both of them explaining my journey. Not to call them out for missing something they should have been very well versed on, but in the hope that it may spare a future patient of theirs the same ordeal as mine. Surprisingly, the head of neurology did reply to my email and while stopping short of an apology (I'm guessing would create liability), did acknowledge reading my story and thanked me for the information to be shared within the department.
Hi
, thank you for sharing this story. That's so great that you reached back out to them explaining your journey. Hopefully, that helps someone else in the future! Best, Allison (Team Member)
Yes and no, doctors couldn't find anything for 9 (9!!) Years.
Until I got my diagnosis of mg musk 2 months ago and had my first bad experience with mestinon which I ended up in the hospital from beginning of December.Oh my gosh, 9 years! That is amazing that you stayed persistent. Good for you!! It is terrific you finally got that diagnosis. Thank you for mentioning you are MuSK and had a complication with mestinon. I've heard of mestinon not working or leading to issues for people often, and I would love to see if this correlates with the MuSK.
Jodi, Team Member
