Hi all,
What is happening with advanced autonomic polyneuropathy is the upper stomach is paralysed due to the nerves not being able to make the muscles move. This bottle necks the food and can not pulverise the food into the sloppy paste that is required to pass into the lower intestine where it is absorbed into the body. As a result the stomach can't expand and accept more food as the insructions are not sent to the brain and the instruction for the muscles to work don't exist any more. It make little difference be it food or fluid I'm constained to volume which is at the moment equal to 4 cups of fluid and a small hand full of solid food per day. It is deminishing as time transpires. Currently the nerves in the throat are under threat and falling to the same fate. So the resulting time bomb from this digestion problem is that my BP and diabetes T2 spike directly proportional to the fullness of the upper stomach. I run into the 28mmol/l glucose reading regularly and constantly over 20mmol/l by early evening with BP raising to 225/140. If I don't eat to get my glucose under control it will not go below 15.5mmol/l in the mornings as the body is panicing and dumping the required chemicals to raise the glucose to attack what it perceves as a threat. These spkies and the lack of nutrients are speeding up the decline of the meylin coating on the nerves which is compounding the problem. Now as the brain sees trouble it grabs all the nutrients it can starving the body of what it need to work. While the brain is doing this it also stops the breathing in an attempt to save itself. Now the interesting piece. The cortex gets involved which is our very basic instinct to survival and kick starts the breathing restoring life functions. So that is what is happening with the stomach component.
What I thought was vertigo happens to be autonomic polyneuropathy affecting my limbs, so there is no sensation in the feet up to the knees and not a lot in the hands either. So what this does is delete the ability for the brain to calculate where the feet are and what they are doing, no feed back. Combine this with an hour of nutrients per day which is used up in the first hour of each day and the legs get wobbly and don't have the strength to carry me. I can lock the knees and stand but walking is a different matter. You may notice spelling and grammer mistakes. This is because I was a poor speller to start with , but the finger do not feel pressure so I'm never sure if I have pressed the keys hard enouhg and when I do the brain is racing miles ahead and I transpose letter. I struggle to spell the simplest of words as I can rmember what the look like momentarily. Now onto the eyes. They are slow to adjust to light or dark making night driving difficult and something I try not to have to do. I have always worked in relative darkness without windows for years. This atleast has given me the ability to find my way around with a very good memory of my surroundings, Night or day as when I look away when traveling i loose the ability to know where horizontal is and wonder.
Lastly as a result of the delamination of the meylin coating I have become super sensitive to medications. This means I am untreatable for diabetes and BP and a few other thing as well. With medication being caught in the food lock it can't get to where it needs to be to be effective. So the paradox is medication given to sort the stomach can't get to the lower stomach to be effective and if it does by chance it can work becase the nerves it is supposed to activate can't activate because the meylin has gone and does not work so again the muscles can work. This is the part I can't get through to the "specialists"
As I have found all information stops at the begging of where I'm at. There are no medical document available in the public arena for viewing. Not even with Mayo.
From what I have read people in my state of health are usually bed ridden. For some unknown reason I'm up, about, talking and doing what ever I can. Wether it is my stubborn determination to deal with this disease or something else I don't know. What I do know is I'm not knocking it just grasping it and going with what ever it deals me.
Now the J tube. It is located to the side of the belly button approximately and enters the lower stomach where the fluid pumped in can be absorbed into the body. It by passes the troat down to the bottom of the upper stomach. It needs to be calculated to suit each person and generally takes 7 to 12 hours per day to ingest.
This why I'm pushing as hard as I can for the J tube. It will buy me time but not stop the progression of this disease.
With out the tube life isn't going to be long. With the tube life will be a little easier to cope with but will only be extended. Eventually this disease will kill me, there is no getting around that. It is here to stay. Because the autonomic polyneuropathy is so advanced I may only see until Xmas, we don't know. But the next stage is I will loose the ability to walk and stand and then the organs will come under attack at which time game over.
The concesus is I shouldn't have made it this far, but as I a stuborn fighter and have a huge will power with an indepth knowledge of what my body will take, so I push the boundries every day trying to defeat what I know I can't. I think it is the challenge that although ruff it keeps me focused and fighting for every moment I can get.
This is a 14 year journey so far and not once have thought why me. I tend to think there are people worse off than me, what have I got to complain about. My new neighbour is riddled with cancer and has not long to go, I should worry. I know what death is like, tried that once, drowned, and was resusitated, watched my mother die with the body shutting down to protect the brain until even it could not stop the process and had my kidneys shut down on me for 18 hours and survived that with Campylobacter, given hours to live but survived that only to contract the autonomic polneuropathy and start this journey. The body tries to fight the campylobacter bugs but can't differentiate between the bugs and the meylin sheeting in the process destroying the meylin and starting the journey. Anybody that has a serious stomach infection like long covid and others this is what you can expect if you are unlucky.
For those who don't know the autonomic nerve is the conduit that transmitts the messages between the muscles and brain to make things happen with out our having to think to do whatever the instruction is.
That is the full picture. How long my piece of string is I don't know but I can say with some accuracy it is definitely getting tighter. Until it breaks I won't give up pushing.
Just had word I'm to endure a colonoscope on the 25th. That should confirm what I'm saying to the specialists. If it dosen't then I have something very wrong inside me. I will do it without sedative so I get to see what the specalists team see.
Sorry for the length but half a story means little.
Cheers.