Hi Rafi:


Guess who just called?? The Infusion nurse. And since I thought it would be a WOMAN coming, when a MAN called identifying himself as the visiting nurse, I said "but you're a guy". The guy started laughing so hard. I laughed and said "now how stupid am I, I automatically thought you would be a woman". He said "that's why I'm calling, so I just don't walk up to your house and you won't know who I am". So we chatted and he told me to have Alan take the pre-meds tomorrow morning about 8:30 a.m. and the guy should be here between 9a.m. and 10 a.m.

Now after reading all these posts about the infusion rates, I said to the man, "he's getting 4 hours, right??" and the guy said "nah, maybe about 3" and I responded "absolutely not, I was told by the infusion company that my husband would be getting 30 grams over 4 hours, and that it should be nice and slow". I then said "I was told 4 hours, I WANT 4 HOURS" I then said "I also spoke to the pharmacist who dispenses the meds and HE TOLD ME ALAN WOULD BE GETTING 4 HOURS" We don't want any headaches happening here". So the guy goes "oh, he's getting 30 grams??, oh, 4 hours then" I said "4 hours, nothing less". He said "fine".

I guess I told him hah!!!!! lol

melody

P.S. Now let's get to Alan's symptoms over the past 18 years.
Started with a little tingling between the toes (he thought it was athlete's foot, don't ask me why but that's what he thought it was). When it got really tingling, he went to the doctor and the doctor examined him and said "you have neuropathy". Alan's slight tingling became BURNING, STABBING, PINS AND NEEDLES TO GO NUTS OVER!!! Between certain toes on each foot!! And he can't lie down (well sometimes he can, but mainly if he lies down flat, or sits up, the pins and needles come back). Don't know why this is.

We began a journey of neurologists, rheumatologists, back specialists (because we thought it was the L3, L4, L5 thing going on in his back). All the back guys said: "no, it's not his back". Alan had various emg's, nerve conductions, etc. went to Allergy specialists, this specialist, that specialist. The only guy who really helped him (and this got him off the fentanyl), was Dr. Theirl who is a chiropractic/neurologist. His adjustments saved Alan's life, believe me. He became a new man after going to Dr. Theirl.

Then we went to yet another neurologist, A Dr. Goldfarb, who was the only one who said "let's get you a spinal tap".
The rest is history. They found protein, she says CIDP, so he is getting IVIG.

Fingers crossed on this.