I am retired 29years in the Marine Corps. I have been healthy most of my life.I now have pain in my face nose and forehead most of the time.I have been to every kind of Dr. not finding out whats wrong.I have almost givin up .
i HAVE MOVED TO THIS AREA 2 YEARS AGO, AND HAVE NOT REALLY MET ANYONE. I HAVE BEEN VERY DEPRESSED, AND RECENTLY MY DAUGHTER TOLD US SHE IS MOVING AWAY.
I have RSD and I am very tired of the pain and no longer having a life or any hope of ever getting better!
My name is Glo,
I am a 71 year old. I was diagnosed with RF in 2005. I have had several surgeries I can’t even keep track. Most of us same to have the same stories.
I enjoy all of the postings. My daughter has been a blessing to have found this site. I wish you all well.
I lost my first Grandbaby to anencephaly in 1996. His name is John Garnet. I know what a struggle it is to come to terms with losing a baby from a Grandma’s point of view. Praise God, I know have two healthy Grandson’s and two healthy Granddaughters. I’d love to offer help, understanding and compassion to others faced with thsi situation.
God bless,
Memaw
Have been diagnosed for 4 years & want to know as much as I can about this disease. Also how others are coping with it.
My newphew born with this Syndrome
I was first diagnosed with IC back in the 90’s and opted for a surgery that allowed me to go in remission from re-occurring UTI’s and constant pain for about 4 yrs. IC has slowly crept back upon me and is now in full force again causing extreme pain and I have had 6 UTI’s just this year alone. I am going to a Urologist Specialist tomorrow for my first visit to discuss the possibility of an interstim in my back. Does anyone have an interstim? If so, can you tell me about it? I would appreciate anything else anyone might have to offer about pain management, etc. Thanks.
I was first diagnosed with IC in the 90’s. I went through all of the treatments available at that time and then opted for a surgery that put me in remission for about 4 years. IC has not hit me again full force…I am in constant pain and am trying different treatment options again. I have an appt with a Urologist Specialist tomorrow to discuss the possibility of an interstim for pain management. Does anyone have an interstim? Can anyone share with me what they use for pain management, etc.? Thanks.
Hello, I’ve tried to get registered with your support group, but I keep getting told that someone has my email address, Catherinedy6@aol.com & sister_k4you@yahoo.com
I’d appreciate if you’d help me get registered, as I have a Meninginoma Brain Tumor, & would like to tald with someone that understands what I’m going through.
THANK YOU IN ADVANCE
Kay
I have Ataxia Ocular Motor Apaxia - I am 41 with 4 children. 3 have their own lives now away from home and my youngest - 13 - is very busy. I love to be outdoors when permissiable to plant or try to do other things or to just drive my chair around town. I also love to do family history and puzzles.
I am a 46 year old a-m woman diagnoised at age 14. been doing going for the most part. mines is mainly my right arm and hand
I Learned I Had Contracted Hep. C Almost 8 Months Ago, Yet I’ve Had It For Over 20 Years From Blood Transfusions I Had For My Liver Transplant In 1986. I Am Now 24. I Just Like Info & I Also Want To Know If There Is Anything I Can Do To Pitch In & Help. I Know By Having The Translpant,Crohns & Rhumatoid Arthritis That There Are Supportive Bracelets Out There For Different Diseases. Just Wondering If There Is 1 For Hep C. Thanks!
I want to learn more about this cause nobody knows any thing about. All I know is that ever one in the world has had the hystoplasmosis (thats what you get before you get the life threatin scarring that i have) and maybe 20 people get the fibrosinig mediastininitis!!! Can you imagin 300billion people get the hystoplasmosis but maybe 20 people get this rare fatel disease Fibrising Mediastinintis!! I would like to know of any body else who has had it or know some some body who has had it (REST IN PEACE)!!!
Hi, I will write when I am in less pain and it is not
1:30 in the morning.
I wanted to thank you for all you work for us.
Yvonne
Hi, I will write when I am in less pain and it is not
1:30 in the morning.
I wanted to thank you for all you work for us.
Yvonne
Hi All,
My alias is chrry393. I am a long time sufferer of chondromalacia of both knees.
I have had arthroscopy’s on both knees and the last news was a hole all the way to the bone, a spur which was cut out.
I was just told to try and loose weight and walk in water.
My daily pain is always a challenge and quality of life is not what I expect at age 41.
Coping and not coping with hep-c. Afraid of the treatment as I already have eyesight problems and great fatigue. Doctors & Family really don’t understand anything about this disease. Does anyone know how to get better?
I have Epidermal Nevus. I want to learn more about emerging reseaech on the disorder.
lichen sclerosis…anybody know about it???