corene-pettit
How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?
CommunityMember47e317 Member
it took nine months to be diagnosed with mollaret's meningitis (now known as recurrent meningitis) and chronic fatigue syndrome. that was really fast because this was 1986. a wonderful, caring medical resident found an obscure journal article on mollaret's meningitis, and chronic fatigue syndrome recognition was in its infancy and largely discounted by the medical community as a whole. i'm eternally grateful for the care i received from that resident and her supervising doctor. they were on a mission to help me, and weren't going to stop until i had a diagnosis.
corene-pettit Community Admin
CommunityMember47e317 Member
CommunityMember50da83 Member
Am 69 now, 2 years ago, got diagnosed with an MRI scan, TSC, and then LAM, but do not have the genetics. I also have Alpha-Gal and 2 bands of Lymes. Since it is genetic and I was supposed to have it all my life, why wasn't it caught on other MRI? Or when they removed my kidney. Doctors are of no help at all.
CommunityMember50da83 Member
Gina Miller Moderator & Contributor
Thank you for clarifying that for me. I'm so sorry that your doctors weren't able to diagnose you sooner.
I wasn't diagnosed with cystic fibrosis until last year, at age 65... it explained most everything that was/is medically wrong with me... I do find some joy in knowing that at least I was able to tell my recent pulmonary doc what she should have done ...what the experts I finally went to did to get me properly diagnosed. She actually thanked me and said she would be getting proper testing done on a few other patients presenting with similar symptoms.
There's definite grieving to go through when you feel that healthcare providers have failed us... I'm sorry you've had to go through this.
Thank you for sharing,
HUGS,
Gina Miller
RareDisease.net
Team Member
CommunityMember1f237a Member
It took 68 years to receive the GA2 diagnosis.
Gina Miller Moderator & Contributor
Thanks for sharing. That's a very long time. I hope it brought some relief your way to learn about your diagnosis?
I use the word relief because I was finally properly diagnosed with cystic fibrosis at age 65 last year. It explained almost all of my many prior diagnoses and health issues. Although I know it can feel overwhelming to get a serious diagnosis, especially after a long journey of not really knowing why one is ill, it can at times bring relief too, and lead to learning more about what we dealing with, and hopefully proper treatments.
Hugs,
Gina Miller,
RareDisease.net Team Member