End stage autonomic polyneuropathy

@smithe1
Hi,
I was diagnosed with severe IBS after near fatal campylobacter dose, which is the main cause of autonomic polyneuropathy. Many diseases can cause it also, like long covid for one.
Strictly campylobacter isn't the cause of the autonomic polyneuropathy, it is the body attacking the campylobacter which in doing so doesn't recognise the difference between that and the nerve meylin, so you start to have demeylination going on. I'm not sue why it doesn't stop once the campylobacter is gone, but would guess once learnt it keeps attacking the meylin, may be. It is not something I have looked into and may be should in case it can be stopped.
Cheers

@cheyne
Yes it is how the continuation of demeylination works. The immune system can no longer tell the difference and continues to attack the meylin.

Hi,
Yesterday was a nasty day. I had problems staying awake with arms and legs turning weak. The usual signs of a body shut down for me. Called an ambulance as I couldn't stop it. However managed to beat it again while with the ambulance crew and was not required to be rush to ED. Later in the day suffered some chest pain, mild but radiating across the chest, thought it was intergestion and carried on doing what I was doing. When I got home I checked my BP and discovered my bpm had dropped to 53. No real big deal, but unusuual for me normally being in the 60's to 70 range. Two hours later the chest pains continued so back to the BP meter. BP had esculated to 196/114 and the bpm had rocketed to 104, shocking as I have never been over 74 bpm. Anyway called for an ambulance again as this wasn't normal for me, off to ED. The usual BS from the team that my vitals were all in range and they could keep me under observation or I could go home. I was asked if the pain was still there and replied I don't know as I had been asleep. The stupid Doc took that as no and walked away. Next moment someone came in with a scanner, like what they use to check pregnant women, no I'm not, male! We got talking and I mentioned what had happened with the Doc that she had misunderstood me and that pain existed but spasmodic. Next thing I'm off for a CT dye scan, having already been X rayed. What an experience, told it would feel warm and I would have the sensation of wetting myself. Damn it was hot, almost had to stop them. Anyway after a quick scan, hours later the Doc appears sheepishly to tell me I have a blood clot in the lungs, victory, confirmation there was more than just a figment of my imagination.
I had to restrain myself from making a sarcastic comment, unusual for me, but likely the response of someone who had not eaten, drunk or slept for 16 hours. I guess I should be thankful someone changed the attitude and did something. This is now what I can expect to continue because of the autonominc polyneuropathy. As a odd twist while I was awaiting my discharge and injections with a script for a 3 months course of meds there was a Californian Doctor discussing health with a group of doctors across from me. Nothing out of the usual until I heard the referance to autonomic polyneuropathy and diabetes. That peaked my interest, but raised no comments from the group. Likely they didn't know the disease. Made me wonder what it takes for a Doctor from half way around the world to be discussing the disease next to me when nobody in this country knows more than the name. Sadly didn't get to discuss it with him, but would have relished a chance to chat about it.
Anyway back home and now contemplating yet another twist from this disease. I find this is going to happen more and more as the legs loose the ability to move, will need to research a work around if it can be found.
Cheers

Hi,
Final day before endoscopy. Having to go 24 hours with nil by mouth but black tea to get the stomach clear for the camera. Thought his would be a doddle but looks like not grazing on food is harder than I though. Anyway I will make it, nothing else to focus on at present. Seems every little blip is ANS related these days. Can't turn around without another revelation hitting me. Amazed at how many symptoms I have ignored and worked around over the years. All comming home to roost now. I guess the diagnosis will literally be a do or die sentance tomorrow. Finding the body is packing up quicker each week.
Cheers

@cheyne Good luck with the endoscopy procedure! 🙏

@cheyne, clear chicken broth or especially lemon or lime popsicles--they are clear even though the freeze make them look cloudy, can help.
I'm praying you are right and the colonoscopy will add things up for your doctors.
Fingers crossed.