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?
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
I'm awaiting diagnosis but had my first crisis situation and got admitted to the hospital in November. I've had to be out of work since and have my first neurology appointment in a few days. Due to having a history of anxiety/bipolar I believe my symptoms were brushed off by medical professionals. We have had multiple ED appointments since my hospitalization for worsening breathing and increased BP not responsive to medication. I was a healthy 36 year old prior to this and mobile. They felt comfortable discharging me in a wheelchair! Unfortunately my own parents believe symptoms are "in my head" and now we have a relationship that is strained and are no longer communicating. Lots of gas lighting. I was put under a psych hold overnight when I basically freaked out about my breathing and called EMS who determined that I was fine. I was begging for noninvasive ventilation because I felt very "tired". The mental health consultant didn't find it hilarious and I was discharged in the morning.
Hey! Sending you much compassion as you navigate this overwhelming situation. Have you had that appointment yet? I would love to hear how it goes! Unfortunately for many of us, myself included, emergency departments too commonly send us home with no advice or further direction, often while we are still in crisis.
I wish you the best wishes, and I hope you can find some peace and people who can help you mentally and physically during this period. Let us know if we can assist you in any way, if you are interested in a support group, or if you have any MG questions we can help clarify!
Jodi, Team Member
