I am Tami Jo’s mon and we have been through alot together. Her illness has bonded us beyond belief and has given us so much strength to get through anything. We have been blessed because we found the right docs at the right time.
I was diagnosed with Histoplasmosis and Fibrosing Mediastinitis in late summer of 2002. Although this is not the only health problem I have its the reason I came here.
I was diagnosed with FM in 1985 at Iowa City Hospital in Iowa City, Iowa. Often search to see what is going on in the FM community and realize that some time has passed.
My 81 yr old Dad has been diagnosed with Idiopathic Fibrosing Mediastinitis resulting from sarcadosis he had about 40 years ago. I’m sure he’s had the FM for many years without it being diagnosed before his extensive stay in the hospital. He has been in the hospital in ICU for 2 months with that illness and also with distended abdomen problem. He has a trach now and has alot of thick mucus. He’s so weak he’s having trouble coughing it up. He’s on 15 mg prednisone for mediastinitis,down from 20mg. He’s got type 2 diabetes which means he can’t be given a larger dose of prednisone which raises his blood sugar which is now in the 200’s. He can’t walk now and must go for rehab for many months. I’d be interested to find out any new treatments for this illness. I’d like to talk to other members who have this illness.
Diagnosed with FM after being terribly sick for over a year. Multiple hospital stays, right lung drained, three balloon procedures. My FM is in my airways and right lung. Dr. in ATL says disease is spreading faster than what he thought it would. Having to be seen by him every 3 months.
Penny
I am living with this and I would like to find out all I can about this disease.
Hi, it’s me, TamiJo. I can’t remember my password for my other account.
anyway, I’m here.
I have just been diagnosed with FM after a 2 year battle of not knowing what was wrong with me. I am from Kasson, MN and have recently gone through extensive testing at the Mayo Clinic where my primary pulmonologist diagnosed me. I am interested in finding others that have been living with this disease and learn more about alternative treatments (if any) and how this is going to affect my overall quality of life in the long term. I have been put on partial disability at this time.
Hi im gemma
I have the idiopathic form and am from australia. I dont think anyone else has FMS here. It is very lonely.
I have been sick for 6 years and have lots of chest pain and pleuricy specifically.
Any suggestions about what to do for pleuricy?
It’s been awhile since anyone has posted here. Anybody still there?
Hey bank lady, I haven’t been on this site for ages. Now that I am reviewing it, it looks way to much for me as I have enough other online pages and what not to check on. I get tired of reading the complaining becuase I know it FM hits everybody differently but I have had it since '84 and feel I am probably just as bad, maye even worse off than the rest of the sufferers and don’t complain.
Well here is my complaint, earlier this year I had an episode and discovery of yet a second rare messed up immune system illness called atypical tuberculosis. And more specific the rarest of the rare the old lady kind - and I am not an old lady. It has taken my gumption away along with breathing capacity and worse of all diffusion. And, there is no cure you get to deal with it on a as it flares up basis with heavy, mulitple, long term antibiotics. Which one family of anitbiotics messes with my arrythmia medication so I have come off of that and i am allergic to the penicillen family of meds. Sweet!
If you are interested in sharing, and I always extend a caring ear, then contact me at maplesra@embarqmailmail.com.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.