Nice to be back…
AnonymousMay 6, 2006 at 10:47 pm
Hauts here from the old US site. Although from now on I will go by Pam H, as Houts was simply a nickname my two boys were called in high school. When I registered the first time back in the fall of 2002 Pam was taken, as was Pamela, so I used their nickname. Also, I was unable to type myself, so it was actually my son who registered me. Even today, the first day, Pam was taken again, so I will go by Pam H.
This is all still confusing to me, as I can’t log on from the discussion forum, only from the link on Norb’s post. Weird, weird… I missed the forum, but did enjoy the UK site, will continue to pop in there still. But what makes me the angriest, are the number of old posts lost, with so much information. I know myself the amount of time I spent the past 3 1/2 years typing posts to people in need. I don’t have that kind of time anymore, will the others? Well, I am just trying to see if I am even doing this right, soooo…
AnonymousMay 7, 2006 at 12:32 pm
Hello dear friends
I am using the same nickname …only the first time i spelt it wrong 😀
Nice to be back …but we can all feel the big loss of the old posts …soo much great informations ….I guess slowly it will built up again though it will take a long time.
Big thanks to the staff for building a new forum for all of us …big thanks to the UK forum too.
AnonymousMay 7, 2006 at 12:36 pm
It is good to be back home. I still can’t believe that all that helpful medical data is gone now and we have to start all over again.
I know I am a Junior here but boy do I feel like an old, old senior today. We went back to my house yesterday and cleaned it out. Just waiting for someone to buy the house that Frank and I loved so much. I’ll miss my yard and planting our favorite flowers. My rose bushes are starting to bud and I wish that I could have taken them with me, but there is no room on my tiny terrace for large pots or I would have dug them up.
AnonymousJune 5, 2006 at 3:58 pm
Hi Pam and everyone else, good to see things are up and running again.
I hope you are all doing well. Anyway Emily (Nala) is relapsing and it seems to be coming quickly. Tomorrow back to the doctor, she says they are going to do cytoxin on her. So Pam she is wanting to desperately talk to you. Her cable is down and can’t do anything on the computer and unfortunately she can’t find your phone number. Could you please call her if you still have her phone number, otherwise you can email me to get it. Unfortunately, she is freaked out and I’m afraid there’s nothing I can do to calm her. Thanks.
AnonymousJune 6, 2006 at 6:31 am
Glad to see you’ve found your way back to us. John will be starting Rituxan next week and is very apprehensive about it. Can you share some positive thoughts with him? The oncologist gave us a rundown of all the potential side effects (including the possibility of fatalities!), so this has really got John worried. After months of IVIG and Imuran, his skin biopsy, which showed no nerve fibers in June 2005, was repeated in March and showed just one fiber….such slow progress, so the neuro recommended Rituxan as the next logical step. I’m praying that this is the answer since plasmapheresis, steroids, IVIG and Imuran haven’t stopped the disease yet.
Husband John CIDP August 2000
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