Hey neighbor!

Sorry to hear about another CIDP sufferer, but glad to here you’re “next door”.
And your doctor is the same as mine when it came to my final dx back in January06, of CIDP, though had gone through hell for three years back until they came up with that final dx.
I moved to Oceanside just two years ago, come in from the Poinsettia area of Carlsbad. We had a house overlooking the ocean, but I couldn’t take all the light there as it came in all sides of the house with many windows, (I have photophobia associated with the CIDP/Horner’s Syndrome), so we moved to a darker house, and my bedroom now looks onto a covered patio with very little light, much to my liking, though those views of the ocean were very nice. ah well…
My current doctor is Dr. Sahagian, who is the chief neurologist at Tri-City Hospital. With my insurance, I can use either Scripps Encinitas or Tri-City, and have been in both, and find both comparable in services and staff–very good.
Prior to moving to Poinsettia, I had lived in La Jolla, and was with the “Scripps Group”, which had me using Scripps Green Hospital, of which to me was a hell-pit–they did so many mistakes, that I kept a diary of them. And one time when I was a patient at Scripps Encinitas, they sent me down by ambulance to UCSD-Hillcrest, which was a very scary place, very old and they had a fire on different floors while I was there, due to renovations, though the staff was very good.
When my neuro couldn’t come up with my final diagnosis, he sent me to his teacher in med school, which happened to be your doctor, Dr. Sheean, who apparently only deals with rare neuro diseases, and it was with him I got my final dx: CIDP with Lewis-Summer variant, (asymetrical).
I went through the normal protocols for CIDP, (high-dose steroid, then IVIG), without any benefit. I have now been on a monthly weeklong plasmaphereses and with cellcept for about one year now. It has helped my motor nerves, and I can walk short distances, using the wheelchair for long distances. But the CIDP progressed into my autonomic system, (small fiber atrophy), and is ravaging my guts.
My doctor told me before, that he was keeping back some last-resort meds to use, that have very bad side-effects. I just wonder when he plans on using them??? My primary care doctor and my pulmonologist both told me this past summer, after a very bad flair this past summer that hospitalized me, that I probably have only two years left since the diaphragm is affected, and a lung infection will do me in after becoming too weak to fight it off.
—
Last week, my neuro told me he wants me to see Dr. Sheean again to see if he has any ideas to stop the ravage through my guts (autonomic system).
I am betting Dr Sheean will put me on the rituxan, that I have been reading many posts about, and see that you have been on it.
WHAT SIDE-EFFECTS HAVE YOU EXPERIENCED?
—
Last week I received two units of blood, as anemia comes on alot. I also have great fatigue from both the CIDP and the anemia. I am also have difficulty now with the digestive system, and swallowing process, so I have a myriad of pills for these problems. All in all, I take about 18 pills three times daily, due to the CIDP keeping on hitting different organs in my guts. They even have me only Marijuana pills to help control nausea and stimulate eating.
I see we are near in age, (I just turned 51 last week), and I was a hippy back in my teenagehood, so I am laughing my head off that now I am taking the MJ legally…LOL! But, I actually don’t like to take it that much, as I don’t want to be a zombie every day, and like a clear mind whenever possible…ah well…
—
So, Grant, give me a shout, and tell me how you are/have been doing…
All the best,
KEn DAvid SOden
(KEDASO)