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Colleen Young, Connect Director avatar

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 3 hours ago | Replies (6931)

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Profile picture for megidigo @megidigo

@cheyne

It sounds like I have the same issue or similar to yours. Food is sitting in my stomache for days and then for me its terrible constipation cause it has been sitting there (I noticed you mentioned you dont have constipation). Have doctors mentioned anything at all for help? I cant find any. I went to see a gastroenterologist and he saw me for 15 mins and said it was just anxiety. The neuro I was seeing told me possible autonomic involvement and that was it. On top of that my feet are getting worse each day and now my arms are getting sore and weak. To be honest Im starting to reach my breaking point which I let my doctor know. I’m literally watching muscle melt. The neurologist told me not to worry about it, its just neuropathy, go and live your life. Since there is no help Im starting to see the writing on the wall. I weigh 160 pounds now due to neuropathy - I wasnt trying to lose weight. I was 225 when this started late 2024. Sorry for these posts but I dont really have anyone to talk to so I apologize.

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Replies to "@cheyne It sounds like I have the same issue or similar to yours. Food is sitting..."

@megidigo
Today I spent 11 hours in ED. Apparently my opinion of what constipation is, is not correct. Constipation is the inability to clear the bowel. Not the hard dry stool I always thought it was, but it also can be. So yes, I do have constipation apparently. Whichever way you view it the muscles don't work.
Ok autonomic neuropathy is the term. this is when the myelin coating on the end of the nerves throughout the body are depleting. This causes the nerves not to work when required because they didn't send the message to the brain they needed to work now, hence they don't get the instruction back now is the hour.
Now because you are struggling with digestion, slow motility, food or fluid stacks in the upper intestine, effectively freezing the action. As I understand it the food stacking in the stomach send a warning to the brain which in turn panics and through FND causes a hold action. This was todays revelation for me. But I'm so lucky I get another step in the trap. The food being stacked in the upper stomach now can deploy vastly more glucose than a normal stomach can with a far swifter digestion rate. This is spiking my glucose levels bordering on coma territory, 25.9mmol/l, at 30 it is into coma. So, it is not what I eat it is the amount of stacking that occurs which generates the high glucose.
I would ask to have my glucose level tested, if only to eliminate the possibility.
In the event you have autonomic polyneuropathy, every nerve can be affected which in turn can affect a lot of the body and what it does.
Things to do, ask for a diabetes check, question the autonomic suggestion and enquire about FND. The you will know what you are dealing with.
If you end up with a diagnosis of any of the issues I have, I can gladly talk you through how it affects me. I cannot diagnose and will not.
I will load another post which details how I'm being affected and how far it has gotten so far.
Cheers