Reply To: Mysterious Disease

December 4, 2018 at 9:13 pm

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