Active
- By SilverStar · New reply 6:09 pm
- Journal · 7 replies
- In less than two months I have had a sudden stroke, diagnosed with a rare degenrative disease (pemphigoid) that could cost me my sight and could be lurking elsewhere in my body... and my husband walks ...
- By KimberlyD0 · New reply 1:44 pm
- Discussion in Tips for caregivers · 15 replies
- My Daughter is 6.5 months old. When she was born her right leg and foot was covered in dark blue almost black vains. We were told she had a venus malformation and it would go away. When she was 2 months ...
- By chelle68 · New reply 1:40 pm
- Journal · 12 replies
- after about two year of fighting with doctors to help me find out what was going on with me and why I was in so much pain, being accused of many things. Med seeking was a big one that followed me from ...
- By tammysci · New reply 12:57 pm
- Journal · 9 replies
- This past week I was reminded that I have a lot to be thankful for, and especially since it is almost Thanksgiving. Out of nowhere I received a letter in the mail announcing that a health professional ...
- By tammysci · New reply 12:17 pm
- Journal · 10 replies
- In the last couple of months people have asked me what I miss about my life before my injury. The answer is everything! How could I not miss things, it changed everything about how I thought my future ...
- By Lynn2 · New reply 12:01 pm
- Discussion in Getting a diagnosis · 521 replies
- Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...
- By groundzero · New reply 11:27 am
- Journal · 2 replies
- Metabolism Volume 46, Issue 10 , October 1997, Pages 1215-1219 Erdheim-chester disease: Low low-density lipoprotein levels due to rapid catabolism Hartmut H. -J. Schmidt , Richard E. Gregg, Robert Shamburek ...
- By Walter · New reply 10:27 am
- Journal · 35 replies
- Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...
- By flowerspy · New reply 12:48 am
- Journal · 4 replies
- Help! I cannot be the only one out there with this disease. I realize it's extremely rare, but there HAS to be somebody out there with this combo that can help. I want to discuss symptoms both physical ...
- By debroy · Posted yesterday at 11:49 pm
- Journal · 0 replies
- I feel so all alone at times! Life this past three years has been total Hell! In the past three years I have watched both my parents die, I have sent a son off to war, and I have watched my husband nearly ...
- By emierzal · Posted yesterday at 11:20 pm
- Discussion in Getting a diagnosis · 0 replies
- Hay.. I'm from Indonesia..(sorry about my English) I have a son that has a very low Hb level (3.4) when he was born..And got a 3 times blood transfution in tree days. (40cc,25cc,25cc). The diagnose is ...
- By Khaye · New reply yesterday at 10:08 pm
- Journal · 3 replies
- Hi everyone, I am 28 years old single female, also sharing same pains and sad feelings like everyone with regards to HSP. I was 22 years old when i noticed my rashes. I already accepted my fate and still ...
- By USAFwife · New reply yesterday at 4:16 pm
- Discussion in Getting a diagnosis · 6 replies
- I am 24 years old, and have been suffering for years now. I have been to gastrointestinal specialist, neurologist, to many general practitioners to count, and several ER's. Yes, I am overweight, 260pd ...
- By 1stukie · New reply yesterday at 9:15 am
- Journal · 3 replies
- 12 yr old newly diagnosed with NF2--acoustic neurofibromas leading to deafness in one hear and hearing loss in the other. Healthy and perfect in every other way. I can't find personal stories or chat ...
- By nohive · New reply yesterday at 3:24 am
- Journal · 3 replies
- My son was diagnosted when I was pregnant with the klinefelter Syndrom. He is 13 now, he started to show learning disabilities so he is in special ed, and He gets a lot of help from the shool. I have ...
- By fltraveler · New reply November 29, 2008
- Journal · 23 replies
- we have a wonderful dr. out of state but need one locally to do follow-up...live near boca..does anyone know of one ...
- By Nina372 · New reply November 29, 2008
- Journal · 1 reply
- This video is for my dad one of the most encouraging people I know. We have both endured most of the same symptoms and he has always been there for me to let me know everything will be okay no matter ...
- By dizzybee · New reply November 29, 2008
- Journal · 7 replies
- had an upper endoscopy done today due to what we thought was gastroparesis and I have a very hard time swallowing. so the middle third of my esophagus is Tortuous (which i think means twisted in some ...
- By dizzybee · New reply November 29, 2008
- Journal · 8 replies
- Has anyone had a PET & CT with contrast and radioactive tracer and felt sick afterwards? I had one done on 10/24 and every since then I've been very weak, nauseous and just don't feel well. I thought ...
- By BWR · New reply November 29, 2008
- Journal · 3 replies
- Hi everyone, My daughter started experiencing severe headaches about two years ago. We took her for CT's and MRI's which indicated she had some large masses of something on her brain. Doctors ruled out ...
