Hey pal–sorry you got the flu…

April 22, 2009 at 3:26 pm

I know you saw my post about when my neuro sent me to a neuro sleep specialist…
Because I have advanced CIDP, and on a slow downhill progression, when it attacked my autonomic system, it hit my phrenic nerve, which controls the diaphragm. I cannot take deep breaths. So, if I were to even get a cold, my doctors said that might even put me in the hospital, as it would stay in the lungs and I unable to cough it out. Plus being on high dose chemotherapy now, and am supposed to stay out of the public, for fear of catching the flu or even a cold.

But, I must report on my update with the neuro sleep specialist.
I have a bi-pap at home, when I unable to breathe well during the day or night. Now, they want me to use it all night long, as well as needed during the day. And now my Pulmonologist is adding Oxygen to it, as my O2 sats are down to 80.
But, the main reason my neuro sent me to the neuro sleep specialist, is to try to fight the great fatigue with the CIDP.
And I must say, it is making a little dent in it.
She first had me try Provigil, even increasing the dose, and it didn’t do anything.
Now, I am on Ritalin. I take 10mg when I first get up, (usually 4am-5am), then again 10am-11am. This gets me through the afternoon without having to go to bed. She wants me to play with the doses, until I find what works best, (I first started with 5mg), increasing up to 20mg three times a day.
Last weekend, my partner was celebrating his birthday, so I took an extra pill in the afternoon, so we could have an early dinner at a restaurant, and I wouldn’t fall asleep in my bowl of soup…lol.
So, the Ritalin is helping me a bit. As I mentioned, I am still playing with the doses right now. I do notice, though, that after about 3 or 4 days of it, I have to take a full day of bedrest to make up for the fatigue.
But at least it is helping me on many days. I used to hate having EVERY day from the fatigue, having to go to bed twice daily and sleeping for 6-7 hours each time. I am not ready to become a bed-ridden person yet, and the Ritalin is helping.
I just cross my fingers, I don’t pick up a cold or flu. I have been staying out of the public for about 2 years now, since the CIDP has become worse, and have not gotten a bug yet…knock-on-wood…