My name is Teresa and I am a stay at home mom of 3 so I knew at 9 months of age that something was wrong with my youngest Eric and since he was already seeing a dr for his seizures I thought that great he can help me get Eric to another specalist to find out why he isnt talking. Well the dr said I had no need to worry because of his seizures he may be a little behind. I finally got some to listen to me at the age of 4 Eric was dx with a speeh problem.It then took me another 1 1/2 to get the dx of apraxia now he is finall getting the help he needs but he still has a long way to go and know that he is 9 he is starting to realize that his way of speaking and sometimes his ability to get his point across is different from his friends.
I have RSD and I am very tired of the pain and no longer having a life or any hope of ever getting better!
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.
My son has been recently diagnosed with static encephalopathy I would like to learn more about what this is.
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 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
I my name is Jenny Gonzalez and i am interested in this condition because i have had it all my life and i don’t know a thing about it. I would like to know anything and everything about it. Also i would like to connect with other people who have it and see what kind of other symptoms this disease has.I am only 20 years old, I have 2 kids and another on the way and i would like to know if they can have the same thing that i do, and if they do if there is anything i can do to help them cope with it.
I have been diagnosed as clinically depressed, and sometimes have feelings of suicide.
At the age of 37 I was diagnosed with MG in Spet 04 after finding a thymoma. The surgery went well but I went into MG crisis about three weeks post surgery. I spent 11 days in the ICU and was released. I was doing great for about 8 months but once again I had another MG crisis in Novemeber of 05. No I have been back at work for a year and doing great!! I am a single mother of two and without the help of my wonderful family and friends I don’t think I would have made it past the second crisis.
I just want to find other people out there who have this condition and hear their stories of survival.
My 16 year old daughter has RSD. I want to learn all that I can about this. She has had it for 4 years. Connect with anyone who has anything to say on the subject.
hi. my name is maryann dempsey. i got my hand caught in a conveyer belt in febuary of '06. i cut my index finger off and crushed my left hand. two weeks later i had surgery on my hand, they put two pins in it and unattached my finger to reattach the nerves that i cut. five hours after the surgery i was in severe pain i could not stand air to touch my arm or hand, and i swelled so much that my skin cracked open. it turned green, purple and red. i told my doctor something was wrong, he said it was ok. two months later i went to a pain managment doctor and they said i had the worst case of rsd they had ever seen. i thought i was going to lose my arm, because the rsd was soo bad. and i still suffer with rsd and it has been a year and four months. and, it has spread to my right arm.
hi. my name is maryann dempsey. i got my hand caught in a conveyer belt in febuary of '06. i cut my index finger off and crushed my left hand. two weeks later i had surgery on my hand, they put two pins in it and unattached my finger to reattach the nerves that i cut. five hours after the surgery i was in severe pain i could not stand air to touch my arm or hand, and i swelled so much that my skin cracked open. it turned green, purple and red. i told my doctor something was wrong, he said it was ok. two months later i went to a pain managment doctor and they said i had the worst case of rsd they had ever seen. i thought i was going to lose my arm, because the rsd was soo bad. and i still suffer with rsd and it has been a year and four months. and, it has spread to my right arm.
I’m interested in meeting other who have the same thing I do and too hear about what struggles they gone through being born wit hydrocephalus. I also want to learn about anyone who has hydro and has had babies.
upcoming surgery, want to learn what to epect for recovery.