End stage autonomic polyneuropathy

@cheyne Thank you for reaching out! Your inspiration is awesome! Take care, as best you can!!

@foundryrat743
Hi,
I have to start forcing the food in in two days, so I have a stomach that is full and paralysed ready for the endoscope 48 hours later. What I eat now gets stuck in the upper stomach for 48 hours. Last chance to get sorted for a J tube. Got to be careful they can get the scope down of course, or it will be stopped. Need to force it to ensure they wake up to my predicament. The body is well and truly eating itself now and the hunger pains have gone. Not used to not having severe hunger pains, starting to drop weight as well. Just another hurdle to jump, or crawl under!
I'm going to get the J tube by any means, fair or foul. Wouldn't be the first time I have had to accentuate the pain and suffering to get an operation. Gotta do what I have to do, it's my life they are playing with.
Cheers and thank you.

@cheyne I have had several bouts with having to have endoscopy procedures, with another coming up in a couple months, so I can imagine how you feel! We do what we have to do! Cheers!

@foundryrat743
HI,
You would think after 4 times I would get used to it, all without sedation and both ends. Will never do the rear end again without sedation. This time life hangs on the outcome, no pressure of course.
Cheers

@cheyne You deserve a hug, with all that you have been through! Just this last year, the Dr. who has performed most of my endoscopies, performed a colonoscopy on me, and told me that was the last one I would ever need! He put that info. in my chart, stating NO MORE COLONOSCOPIES!! So, that way, no one will be pushing me to have another one! The prep. for that particular procedure was difficult for me, becsuse I am allergic to sulfa drugs, and sulfa is a component of the prep! Thus, the inflammation I got from the prep. was itchy and painful! So, I can sure relate to what you wrote, about endoscopies! I am not looking forward to the one coming up, down my throat, in the next couple months ( Transesophageal procedure). 😲

@foundryrat743
This will be my last as I will not allow any more. My body is eating itself to stay alive and I'm losing the will to eat or drink. Whatever happens after the endoscope could be lifesaving, which is the only reason I'm doing the upcoming one. Nine days to go and counting, I think I will make it, but I wouldn't bet on it right now. I have to do it without sedatives to be alert after and to watch the video as it goes down. I want to know for myself what is going on in there. Fortunately, I just think of it as swallowing a sword, seems to work and the gaging stops. I always take sinus relief before to ensure I have a clear nasal passage to breathe. Right now, they might have a problem getting past a partial working throat. The throat nerves controlling the muscles are under attack and starting to fail.
I did my last colonoscope without sedative and regretted it ever since. I didn't appreciate the hacking motion from the operator, somewhat painful. A real pain in the Butt!
Good luck with yours.
Cheers

@cheyne Since I have dysphagia, from having Parkinson’s Disease, on top of my autonomic polyneuropathy, and a rare immune deficiency disease, I have worries about my upcoming Transesophageal endoscopy procedure! I sincerely wish you the best of luck, that there will be a successful outcome, with your upcoming endoscopy! I truly feel so bad for the situation you are having to face, and know that I support you emotionally, and understand just a little, about, how difficult this is, for you to go through! 😉

Anybody on the group with aggressive Crohn's Disease?

Good morning, may I ask you with what disease did your doctor diagnosed with?
Kind regards
Hannelie Smit 🌺

@foundryrat743
Hi,
There are many diseases that involve the autonomic nerve. Parkinson's is just one of them. I'm really sorry to hear that you have it. I don't wish this on anybody, well maybe a few polititions around the world could do with a dose! I have been tested and passed I have also been tested for MS with both older sister and brother succumbing to it, I passed that one also. The FND is the one they all missed until I had to ask, yes or no, answer me, confirmed.
You should be ok with the procedure. Once the probe is in it really doesn't matter how far it goes. All you need to deal with if you don't get a sedative is the gagging reaction. I just think of a sword going down and relax, stops me gagging.
If you don't mind me asking how far has the autonomic polyneuropathy gotten so far?
I'm heading into dysphagia while the stomach is in gastric paralysis. Definitely affecting the limbs and starting on my right eye. As the body is struggling to find enough nutrients it is sucking the very life out of me. I know I should be hospitalised but as long as I can cope at home and am still able to breathe here I stay.
I know my hospital records have had a red flag placed on them from Gastro, which means that ED have to look beyond the normal vitals I exhibit, but still I don't trust them to do anything to help.
Take care.
Cheers