Anyone out there with this diagnosis? I am recently diagnosed (we thought I had CFIDS), unable to work, on disability (thankfully), and looking for others to connect with.

Hi Pam,
I was misdiagnosed with MS for 13 years before I was finally diagnosed with Mitochondrial Myopathy. Unfortunately, the correct diagnosis was discovered after my youngest child was diagnosed and passed away the week before her third birthday. It's a difficult diagnosis to live with, as you know, but it can be somewhat of a relief to finally have a name to go with the symptoms you're experiencing.

Before my illness progressed, I was somewhat of an "overachiever," working 2 jobs,taking care of my children, volunteering in my church, and so on. I've had to slow down to nearly a crawl, which has been extremely difficult from an emotional perspective. The disease has caused extensive health problems (gastroparesis and intestinal pseudo-obstruction, TPN, respiratory failure with trach and vent dependence which has fortunately improved to the point of decannulation and non-invasive ventilation, severe ataxia and power wheelchair use, profound deafness as a result of ototoxic meds necessary for pneumonia, and so on.) I've been on SSDI for four years but I am working with my state's rehab commission and receiving financial support to develop skills in order to return to work in some way. For the past year, I've been taking ASL and Deaf Study courses to improve my communication skills, taking on-line courses for my MSN in Public Health and am working as an independent disabilities consultant (my background is in Early Intervention and service coordination.) Most of my work is via the internet, but I still meet with clients in the community as I am able,and I give workshops and write program grants for non-profits.

It's not a great diagnosis to have, but there is support available and there's hope that your symptoms could stabilize enough for you to somehow remain active in your field. It's a terrible blow to go onto disability and leave a job, profession, identity behind. Maintaining your license and keeping current on nursing trends are definitely worth the energy. Feel free to contact me if you want to chat. I know several other nurses who have metabolic illnesses, you are not alone.
Take Care,
HeidiC
mom2colemankidz3@aol.com

Hi Heidi Thanks for the message. I hope things are improving for you, it sounds tough. I just got my RN license renewed, then got a letter fom the Oregon board saying they can't allow me to have a license, even tho I was only going to volunteer, not work. I am devastated. I want to keep my license up, just to volunteer- like taking BPs or something simple, and in case a treatment is available that helps my condition, whatever it turns out to be. I don't even have a dx yet, the docs are still working on it. Any thoughts? Pam