kadaso, billt and all–i got accepted into stem cell trial
AnonymousMarch 15, 2009 at 7:33 pm
March 16, 2009 at 11:03 am
Dawn Kevies mom
AnonymousMarch 16, 2009 at 4:56 pm
I just found and read your blog. Congratulations on being accepted into the stem-cell programme, and I wish you the best of luck both with your insurance problem and the treatment itself!
I have been so lucky; after batteling what my neurologist diagnosed CIDP for years, he finally handed me over to an oncologist\hematologist who found the correct diagnose (Proteinaemic Demyelinizing Neuropathy – PDN – that involve other immune-cells than CIDP) and gave me a chemotherapeutic treatment – Rituxan – that gave me my life back. It’s four years now since I had the treatment, and even if I still have nerve-pain and fatigue, I would say that I’m 80% recovered compared to the worst periods of my illness. I can live with that!
If I compare my situation as a CIDP patient in Norway with being a patient with the same diagnose in the US, the bad thing is we don’t have stem-cell treatment here, but the good thing is if we had had it, the state would have paid for it.
Again, I’m crossing my fingers and toes for you, and if you feel like it, don’t hesitate to contact me through “Private Meessages” or via my e-mail address given on the Forum.
AnonymousMarch 18, 2009 at 12:28 am
Congratulations and good luck !!!
I mean both with all of my heart. You will face deep challenges both to you and your family. You will be doing such wonderful research for all of the rest of us. I am thoroughly jealous.
I am also concerned. It is a very challenging procedure. My brother went through a similar treatment regimen for multiple myeloma. My heart goes with you and I offer my prayers and support all the way through.
Keep on letting us know how it is going. I am with you all the way.
AnonymousMarch 18, 2009 at 2:31 pm
thanks so much for your kind words and encouragement! the way i feel, i can not wait to begin– my website: [url]www.alicedicroce.com[/url] is always a good way to keep updated– the blog is active, etc…
i’m so looking forward to it.
allaug, i wrote you privately..
AnonymousMarch 19, 2009 at 2:52 pm
I wish you much luck with this.
As I have posted on this subject in the past, I find it incredible that all costs wouldn’t be covered by the doctors/researchers working on this, in the name of research.
If we, (us CIDP/GBS people here), had a well known disease such as MS, MD, etc., I’m sure costs involved with research with stem cell and CIDP would be covered.
But, because we have a rare disease, the costs are on our backs.
Let me know how it goes, Alice. Both with the actual procedure, as well as the insurance coverage/financial coverage.
I’ve had long talks with my neuro, and he has said he is not satisfied with the results yet of the the stem cell/CIDP research. He said if he was satisfied, then he would join in their research, and open it up to his hospital since he is head of neurology.
All the best,
AnonymousMarch 19, 2009 at 6:49 pm
yes, the $$ thing is uncivilized to say the least. my blog: [url]http://www.alicedicroce.com/id14.html[/url]
is a nearly daily update on everything to do with this process.
ya know, it seems every neuro has a different idea of what’s good and what’s not– i have seen their statistics and have spoken to folks that have gone through it. i’m convinced! but anyway– i’ll be happy to be a rat 😉
hey, with a less than 1% mortality rate, what have i to loose. as it stands, i can’t walk and my pain is unbearable– i’d try an indian sweet grass transplant at this point…:eek:
be in touch,
allaug, did you get my message?
AnonymousMarch 22, 2009 at 10:11 am
but now i have a different fight– it is to compell the city of san francisco to [B]allow me to switch to the insurance group i need and make it effective immediately[/B], rather than the usual july 1st effective date.
i am asking people on this forum to take a few moments to write an email protesting their denial.
all info is provided on my blog: [url]http://www.alicedicroce.com/id14.html[/url]
please everyone, this sort of precedent helps all of us!
March 28, 2009 at 1:30 pm
Great news Alice. Regarding your insurance issue, have you contacted you congressman or senator? With the new President’s push on healthcare, you may find some powerful support from the political front. Good luck.
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