New journals
- By Muriel · Posted 9:10 am
- 0 replies
- One more meeting this year. Our wonderful Dallas meeting in December. That's where it all started back in 2004. March 13th and La Donna and Maurice and Jim and so many others. We've lost so many and of ...
- By BWR · Posted 12:02 am
- 1 reply
- 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 ...
- By rgg · Posted yesterday at 11:55 am
- 0 replies
- If your question is should you take your daughter to the NIH, absolutely! my son's doctor discouraged me for years, I knew what his illness was. I took him, the treatment you and your child receives is ...
- By dizzybee · Posted November 19, 2008
- 10 replies
- I finally got an appt with a geneticist on 1/13. This is just a meeting to see if I need genetic testing, but at least it's a start ...
- By tammysci · Posted November 19, 2008
- 1 reply
- Over the past 15 years I have struggled with pain and it can be very frustrating. When I wake up, the first 15 minutes of my day are the worst. I even bought a new mattress this year to try to help my ...
- By 1stukie · Posted November 19, 2008
- 0 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 CanadaNuse · Posted November 17, 2008
- 0 replies
- A lot has been happening on the home front. Ash's medical team including mental health are changing her dosage of medications, times given etc. In hopes that the current combination of medications will ...
- By fltraveler · Posted November 17, 2008
- 14 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 walter_comer · Posted November 16, 2008
- 0 replies
- Had an appt. to receive the results of my MRI & Abdominal CT scan in Oct. I've never seen my Oncologist so upbeat. He was even joking with us. But, he reported that there has been no further growth. So ...
- By Ragna · Posted November 15, 2008
- 5 replies
- hi everyone,have anyone here who had a child that has been diagnosed after going to see NIH program,or does someone have a story for my how this goes over there!my doughter is getting worse and i need ...
- By dizzybee · Posted November 14, 2008
- 6 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 mishap · Posted November 14, 2008
- 0 replies
- People thought I was faking it but now I know how to "Tell them where to Go" for proof I'm not imagining it. Ha!Ha!Ha ...
- By tammysci · Posted November 13, 2008
- 9 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 rhysmom · Posted November 12, 2008
- 0 replies
- HERE TO BE A FRIEND TO ANYONE WITH A CHILD WITH LEARNING DISORDERS; MY SON FINALLY HAS AN IEP,AIDE, WRAPAROUND,ETC ...
- By dizzybee · Posted November 11, 2008
- 8 replies
- to all of you with your words of encouragement, advice, ideas, etc. Thanks to Gail at VHL for calling people for me. Hopefully, (fingers crossed) I will going to a genetics counselor at Shands in Gainesville ...
- By tammysci · Posted November 11, 2008
- 5 replies
- Veteran's Day was not a day that meant much to me personally until I started meeting veterans coming back from Iraq. I was surprised to find out that the amount deaths because of the war in Iraq was 4193 ...
- By GaPeach · Posted November 11, 2008
- 0 replies
- Hello All, I have the most exciting news!!! MARK YOUR CALENDARS NOW, you won't want to miss this meeting! Coming to the February 7th, 2009 Atlanta support group meeting will be none other than Dr. David ...
- By dizzybee · Posted November 9, 2008
- 5 replies
- As you may have read, I have dysautonomia which is a dysfunction of your autonomic system (everything in your body that works without you thinking about it, brain, heart, breathing, bp, bowels, kidneys ...
- By dizzybee · Posted November 9, 2008
- 3 replies
- I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed me to, but I never got. I had ...
- By mumoftwins · Posted November 9, 2008
- 0 replies
- My daughter has been diagnosed with Megalencephaly Polymicrogyria Polydactyly syndrome. She is the 7th in the world to be diagnosed. There are 2 families in the UK with children who have the same syndrome ...
