Thanks so much John. I appreciate the resources. I have a couple more appointments here, but if they don't lead to improvement In planning to come to the Mayo Clinic in Jacksonville. Thank you again, and happy holidays!

I just watched the TED talk. Wow, she was almost telling my same story. I'm one of the semi functional cases she refered to. I can work at my office job, but spend the weekend in bed recovering. It's also interesting that she brought up how infection like Ebstine Barr has been linked to this condition. I am going to contact the Jacksonville location and begin the process of setting up an appointment. Thanks again for your help.

Hi Jeff (@jeffrow), glad you had a chance to watch the TED Talk video. It really is inspiring. If possible, we would love to hear how your appointment goes.

John

Ask about Lyme. One of my co workers is on at least a year leave for EB and what is now Lyme and many co bacteria. Lyme is hard to identify. I hope the CDC recognizes it soon. Good luck. Your story sounds like my life and I am so close to disability.

I just watched the TED TALK....I wanted to cry. This is me and I have to find energy to get the help my son needs first who has CG.
Train wrecks here:(.

@johnbishop as one who is new to this, can two family members be treated?

Hi @kellye5 that is a really good question and I would definitely ask the doctor. There are so many autoimmune issues and I know some can be genetic.

I have polymyalgia rheumatica (PMR) and idiopathic small fiber peripheral neuropathy (SFPN). I was recently corresponding with my cousin who is a couple of years older than myself. I found out he also has PMR and neuropathy like myself. He thought it might be that both of our cases are related to genetics. I just got my results back from the Genes for Good which is a free geneology test but you have to use a Facebook app to participate. After you do a bunch of daily surveys and a health survey they will mail you a spit test which you send back to them. It takes 2 to 3 months before you get your results back but they will let you download the raw data. They show your heritage info in a nice chart and some other stuff. I've been told you can download the raw data and send it to a lab and they will interpret the raw data for about $10 or so. https://genesforgood.sph.umich.edu/

John

Thank you for this information. I will look into that asap. I am beginning to wonder about some of the symptoms I have in relation to my son with CG.

@johnbishop that Ted talk is great. I would love to show it to all my providers from over the years and family members. It has taken at least 16 years to be diagnosed with limited systemic sclerosis and my medical record also has "psychogenic" and "psychosomatic".
I can totally relate.