Reply To: New- CIPD and Central Nerves/ Cranial

August 7, 2016 at 5:50 pm

Well IM not the only one to experience damage to the autonomic nerve sys. I have always tried to get my Dr’ to see this.I have all the symptoms of MS except scares on the brain and cognitive slow down.
This was a 12 days visit to Kennestone. I had very good service, food and care.
This is the 10th time for CIDP. IVIG 3 times in the last 2 years. Seems like its about 50 thousand a pop so Ive got it covered. I suer am tired of this. Due to my pull through because of esophagus cancer I aspirate frequently. Phenomena alwaya followed. Sunday the 24 of July I aspirated 2:00 AM or so. I waited until my wife was awake to move to the hospital. You say how did I know it goes to Phynonia? Been there at least 5 times and it hurts and will wake me up.SO THE HOSPITAL SENT ME TO A ROOM . THEN AOUT 6: 00 PM got to a room and THEY started iv antibiotics. I responded to the med’s and then on Tuesday the 26th in the morning I aspirated again. yhis time it was followed by a stroke. I developed a Brain bleed (CT scanned) and a cardio fluctuation. It went from bad to worst. STAY OUT OF HOSPITALS. Each DR coming by Through his or her opinion without any overall care for my CIDP and pull through. They all nodded when I said CIDP but I knew they had never treated some one with all this and 75 years I think I should go to Vanderbilt, one of the Hospitals on the best for us list. I’m South of them and hesitate to leave my Neuro and regular Dr.They both have tried there best to treat the most with the most. I just fall outside the most Crowed
Time is money sos they Patch and dash, looK back and pat themselves on the back, Smile and dash to a person they can help,they have the best education this word has to offer and they are smart.But again time is money.
IU was thinking the other day only 8 in every 100,000 get GB and only 3 of those 100,000 get CIDP. How many of those 100,000 have CIDP more then 5 times. I think I’m on the tight wire as I get older. If anyone has better numbers then I have please correct me with a printed article that can be checked by a organization of Doctors or elsewhere.
In the Hospital I lost 5 pounds and need to snack more often and get back to 200. I am a junk food junky. “CANDY< SWEETS and sugar”. I”m looking for feedback if you don’t mind.