Hi All, Sorry we haven't been on much. Tom is going really well 18 months after starting treatment. His CSF is still not completely right. His hearing is down...
Hi Louise, I saw your past on the yahoo group and saw your question about the neuropathy problems. I first would say that I would never begin to diagnose or...
Thanks for the reply Jennifer, My neuropathy is causing weakness in my feet and lower legs and now muscle atrophy in my calf muscles. I have foot drop & weak...
Dear Jennifer and Louise, Sorry to hear of your suffering, and it must be frustrating on top of painful! As moms, it is so hard to be down or unable to get...
Thanks Karen, None of us were tested for Nomid since we did not appear to have symptoms. I was referred to a Neurologist and Nerve conduction and EMG tests...
Hello to everone I just want to se how everone is doing. My daughter tiffanie is doing very well .I still having the headachesand a little heal pain now.but...
Hi Becky, My daughter Alice and I will be at the NIH the same week as you. Alice is 22 now and I think it will be great to meet you and your daughter. See...
hello thats cool .are you staying a the childens inn .we are .take carrebecky lieffers <lieffers@...> wrote: Hi Becky, My daughter Alice and I will be at...
Hello to all, We got called this week by Nikki to change Seth's follow up trip to the NIH, since Dr. Goldbach-Mansky will NOT be at the NIh the week of AUgust...
Hi Everyone, Thanks for all the info on possible new treatments.Karen. I'm glad the pregnancy is moving along OK. Three boys don't make you too crazy!, but we...
Hi Louise and Everyone I know it's been awhile, but I do read all messages that come in. Glenn has been pretty busy; he now has hearing aids and an FM pack...
Wayne Hand
HANDANDHAND@...
May 31, 2007 11:58 pm
1433
Hi Maxine, Lovely to hear from you I'm so sorry you are having problems at school & about Glenn's bone problems. Good luck with the advocacy. I know the...
Hello all, I do not write in often and wanted to say hello. Isaac is 3 years old today. It is a day of a lot of reflection for me. We have come a long...
Hi Kathe, Reading your post made me cry, I too had the same reflection on Michaels 3rd birthday, it was an onslaught of tears and belly laughs! It is...
Dear Kathe & Karen, Thank you for your lovely emails and Happy Birthday to Isaac. I feel very blessed today to send Tom of to represent the region at State...
Hello to everyone!! I am so sorry it has taken me so long to write! Between work and kids, life is flying right by! Anyhow, life has been crazy, my sister died...
Wow Sherri You have had heaps going on. Wishing you all the strength you need to handle the challenges you've been facing. And try to have a happy birthday! ...
Dear Sherri, I am so sorry that your father has stage 4 cancer and your sister died recently. Plus Miranda's headaches and your health issues, you need a ...
sherri i'm ao aorry to here about your sister ..Happy birthday to youtoo.My daughter Tiffanie and I are going back the same week as you .take care becky ...
I banned him a couple of days ago. I wonder if there should be a policy where new members either post there story/interest to group or that they post to me. I...
Hi to all, Well it has happened again, I thought one funeral would be enough for the year, but.... My dad died saturday! My poor mother is just devastated....
Oh my god Im so sorry to hear your news, I know how it feels to lose your dad as we lost mine 18 months ago now. My thoughts are with you at this sad time ...
I'm sorry to hear about your Dad. I pray that you will be held up during this difficult time. We will be a the NIH with you. See you then, Camille Lieffers...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
