Wow-gone For 2 Wks, And All Hell Breaks Loose…lol

February 6, 2010 at 6:30 pm

Hi Sweet Alice, (and Sophie, too),

It is WONDERFUL that you can FINALLY post
under, “SUCCESS STORIES” !!!
It is fantastic that you can use the “C-U-R-E-D” word !!!
I have been following you all through this, and am SO pleased
that it worked. Of course, you are still a little weak after this,
as Dr. Burt said it would take about 6 months to completely recuperate.
But you sound so wonderful, walking and swimming now–FANTASTIC !!!

I am a bit excited myself–this is just in the “talking stage” at the moment,
but there MIGHT be a possibility to have a HSCT done here at USCD !
I am putting it to them this way–I am dieing from the complications
of CIDP anyways, so why not give it a stab?
I went to the top neurologist in our county, (San Diego), to a neuro
who only deals with rare diseases, (you submit your records, and he decides if he wants to see you or not…that type of doctor…), back a few years ago, when I got my final diagnosis. (I was sent to him by my current neuro as a second oppinion–he was actually my current neuro’s teacher back in med school.)
So, I had his email address, and wrote a long letter to him, including the work that Dr. Burt was doing at Northwestern. It was basically a “begging” letter, as I told him I had been told by 4 doctors on the team, that I was dieing from the complcations of CIDP, and had failed at all the other normal protocol of treatments.
I know that this doctor is a very progressive doctor, and that UCSD has a large facility just for stem cell transplants. I thought I would give it a try, since it won’t work out financially with Northwestern.
TO MY SURPRISE, last week he responded !
He said there may be a problem with insurance, but he may be up for it–he had to talk to my current neuro. I figured that I have Healthnet as my main insurance, but I also have Medi-Cal here, which might back it up, since it is for California-only procedures. At least this is worth a try !

So, for the past two weeks, I have had doctor’s appointments for every weekday except for two days, so, I haven’t been on the site for 2 weeks.
And I came back today, starting with the post, “Cured of CIDP? Didn’t think it was possible”, not knowing what was posted prior, ans saw all hell had broken loose.
Please come back to the site to let us know how you’re doing, as well as Jim is doing. I know you are cured, but it will help me to tell my neuros how it;s going for the both of you. There are MANY people on this site that did support you through every step you took. And as you said it for yourself, that to teach newcomers to the disease, that there are other possibilities to trat CIDP. I wish Dr. Burt would hurry up and publish his paper on his research that he just did for the past few years. Once it gets out into the neuro community, the quicker it might become a normal protocl treatment, and then the insurance companies will HAVE to cover the procedure.

I have not been doing well the past few weeks. By being on Cytoxan for almost 3 years, that as well as being immobile, has caused Osteoporosis, and I have fractures. So, my Rheum. sent me to a Pain Dr. on Friday, who told me he will be putting needles with a steroid into my spine in my mid-back, 4 shots, one every 2 weeks, doone in Interventional Radiology, so they get the needle in the right place where the fracture is. It is quite painful right now, but I am taking plenty of hydrocodone.

And my weight is in a nosedive-having lost over 50lbs. I am still having the side-effects from the Cytoxan, and even though I take the Marinol–sometimes it works sometimes not, to get me to eat. The doc said I am close to getting a feeding tube–Frank is even talking about it, since I look so poorly. I am real skinny, my bones protrude, and I am pale white. Ah well, whatever.

So, if this goes through at UCSD, OF COURSE I will have a ton of questions for you, even though I followed you day-by-day as to everything happening to you. I am just afraid that being on the Cytoxan for so long, did some damage to my bone marrow, like my Rheum. told me it might have. I hope that won’t be the case.

Keep in touch, darlin, and give a kiss to that Sophie girl too.