Badges (1)


Member has chosen to not make this information public.

Groups (1)


Member not yet following any Pages.

Posts (3)

Sep 23, 2018 · Extreme brain fog after mono. Signs of MS? in Autoimmune Diseases

Hi, I’ve only tried replying a couple of times, so I hope this works. When I read your post I felt like I was reading my life story. I have been diagnosed and undiagnosed with ms so many times since college and am in my 60’s. Fatigue, brain fog, pins and needles the whole bit. Not making a diagnosis, but do some research into mast cell activation syndrome. I have many autoimmune diseases that were driving me crazy trying to get a dr to listen until this June when bingo I was diagnosed with mcas. Hope this helps. Just realized posted to wrong place so @czechmate I hope you get this. John knows how technologically challenged I’m

Jul 2, 2018 · Interstitial Cystitis - I would like to connect with others in Kidney & Bladder

I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

Jul 3, 2018 · Autoimmune diagnosing in Autoimmune Diseases

Hi, hope I do better at this than yeasterday. John knows, I goofed up. Anyway I have several autoimmune diseases. Yesterday I only mentioned IC. It took several yrs to be formally diagnosed with Mast Cell Activation Syndrome that is affiliated with autoimmune diseases. I tried and tried to get drs to listen and not until one of them had a relative be diagnosed with MCAS was I vindicated and this just happened last week. Thank goodness I have a wonderful pharmacist who is bending over backwards to get me the correct antihistamine compounded that I won’t react to. My allergist is the one with the relative who has had trouble trying to find any meds that I don’t react to negatively. I have to have everything compounded. So, I guess my hope is that don’t give up and learn as much as you can. Also, do things for yourself that will do you no harm, but be proactive with what you can.