Mine also was mysterious and advanced.
I’m having another bought of GBS or CIDP. We found that the infusions of IVIG were not working. We decided to revert to Plasma pheresis. After 6 times the PP was not working either. They concluded that my age had a lot to do with the system failures. The big one is Blood Pressure. It wonders all over the place. There is absolute no order to it when it jumps up. Sometimes I take my meds as the Dr requested and it still goes up. Later it plummets. So we take a smaller dose and nothing happens today but next week It tops the BP machine.
I’m also having stomach problems as I’ve lost over 80 pounds. There are several other autonomic systems that are failing. This set of CIDP is the worst I’ve ever had. The neuropathy of my feet goes right on. My energy is at a low point. I breath hard just walking from the bedroom to the kitchen for breakfast. I’m able to sleep well this week but the is not always the case.
I’m scheduled in to Mayo Clinic next week. A team will study my problems and separate the CIDP and old age. The tests are, to see if my nerve pathway is inhibited by loss of myelin . They shock you over 50 times and measure my response up and back. That we hope will all stay in the milliseconds. But I get so jumpy i do not understand how they separate an advanced shock and one that is normal (me at ease). The other difficult test is a nervebiopsy. Ever had something strike a nerve? It hurts. I’m sure by now they have thought of other hurtful tests. I should be down in warm Jacksonville no more the 3 days and I’ll be home on Friday. Must at least stop at Tybee, Savannah and other southeast spots. There are several misspelled words but you get them and tell me after you read the report, my “Resume’. It went very smoothie and NO pain. not.at all. My CIDP/Lewey body did not interfere with that procedure.
I’ve read more about Lewey Body mine case particularly. It is sometimes called Lewey Body Alzeimer’s. Not good It will stay with me until my memory forgets everything. Mayo says 3 to 5 years/ Hey I’m 76 now , Split the difference 4 years I’ll be 80 years old then. I’ve had a wonderful life and I’m grateful for all I’ve had. Two years ago my Mother had Alzheimer’s for her last 2 years. She even forgot who I was and being big she was frightened of me. She was on a liquid diet because she had forgotten how to chew and swallow. My progress will be a little different not really except I’ll go out with my boots on. I have a little shop in my large basement and I love every bit of it except the coldness. One day one of my friends said why don’t you insulate your hot water heater? Then the basement would be cold.

Mayo had more to say like a little Dementia., little Parkinson and Age. So I know my days are numbered , I’ve told my wife where to take me when she can no longer care for me. I’ll accept that but knowing she is safe and in control of our little home is enough. One day she will have to give up the home (52 years). I probably will not be able to help her but maybe we can be together again for another 50 years. Then I’ll see her for eternity.
How does one keep from crying?. I guess by dwelling on the good times and a wonderful wife.

Eternity??, but the Bible says we won’t know our wives. Now I’m about to cry again.
Last week I saw an article about donating a brain for Doctors to try to determine more about GBS/CIDP/Lewy Body Alzheimer’s. Maybe it will help another lost soul.
I whole heartily thank Mayo in Florida. Go its not as expensive as one might think.
This was my second trip to Mayo (once up north in the winter and the last to Florida in late summer. Fla is the way to go.
Right now its just a waiting game. The future looks bad for me. My Mom had Alzheimers to the point of forgetting how to swallow. You loose a lot of things by that time.
I hate to be the bearer of poor news but Pray for me and yourself. Courage my man! I’m not a strong person and ap to cry when I know I will leave my wife, courage Bjill I do’n want her to see my tears. Love

Well Ive just had my 11th IVIG (Providgen) and am not that much better. I’m on a 6 week interval now. I have alway been very very active person. At 75 I exercise 4 times a week. My idea of exercise is to work each exercise until I can’t do another repetition of it. I first ride an incumbent bike for 30 minuets of an hour with resistance. When I stop i’m breathing hard. Not through my mouth but heavily. I also break a light sweat on my brow.Light machine exercises for another hour. Thats 3 times a week and light chair exercises the other days. I’m still walking with a cane and having most of my symptoms remaining. More later fellow vets.

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.