Neuropathy in feet and limited toe movement?

@jakedduck1 We had a Hawaiian pizza. I had eaten too much at breakfast, so after my wife's surgery she was ready for lunch, but I still felt full. I seem to have coconut cream pie often at Shari's. Costco pies are really good. We get 12 slices of the apple pie and 16 of the pumpkin. We don't have them very often. I'd eat desserts and sweet snacks all the time, but I exercise a lot of self control. We have dessert most days with either lunch or dinner, and I limit candy to two small pieces a day. It's a challenge to walk through the kitchen and not grab a handful.

I've been losing weight lately, and I need not to lose much more. I'm not sure why I'm losing weight. It could be connected with my swallowing problems. I have to chew everything thoroughly because food gets backed up in one or more of three places. Sometimes the valve (sphincter) at the top of my esophagus doesn't open when it should, so I have to wait for it. In the esophagus there are rings (of ligament, I think) that line the walls and normally fire in sequence, which moves the food down to the lower sphincter. Unfortunately, they fire randomly instead, slowing the process down. Then the food eventually gets to the lower sphincter, and just like the upper sphincter, it doesn't open dependably. Sometimes I can swallow normally, but most of the time it's a pretty slow process. So, I sometimes get tired of chewing, or tired of waiting, and don't eat as much as I probably should.

It takes a lot of chewing when I eat meat, especially. Tonight I had a small piece of boneless chicken thigh, and it was a chore getting it down in tiny bites. Sometimes it helps to drink a sip of water or milk, to wash the food down, but liquids are becoming problematic now. I drink small sips after inhaling, with my chin tucked in. No straws anymore - it propels the liquid to the back of my mouth too fast. Not supposed to drink pop, but I do sometimes in the summer. The trouble with liquid is that I can aspirate it, which does happen occasionally.

TMI, I know. Sorry about that.

Jim

No, Jim, not TMI, just the right MI, ya big lug. I want as many grisly facts as you wish to convey. The swallowing problems I can definitely understand. I do not have much trouble, but I have noticed over the last 5 years or so that I aspirate more, I seems to have more swallowing issues in general. A week ago I swallowed my usual morning pills and I immediately started a burt-and-swallow routine that went on for several minutes. I honestly thought it was not going to stop! I would swallow and immediately have to burp, and that happened over and over again continuously. It was tricky just to keep breathing I was so busy with the swallow & burp thing. There must be a big chunk of the brain that is dedicated to swallowing and I think something has started to affect it, maybe I'm starting to get Alzheimers in that area. Sheesh!

@jesfactsmon

So you understand how much we take for granted in the performance of various body parts. I didn't mention the first bottleneck in my esophageal dysmotility. A nose and throat doctor looked at my swallowing several years ago and noted uncoordinated movement by the back of my tongue muscle. Gathering what I've chewed in preparation for swallowing is usually a conscious action.

Aspiration can become a deadly problem pretty quickly. I do the burping thing especially when I drink something. Sometimes I can't get the burp to work. One more little thing we take for granted, even though it isn't very socially acceptable.

The doctors and therapists I've seen with regard to, among a lot of other things, the swallowing issue have said my unfavorite word: "Probably", when I ask if there's neuropathy involvement in whatever we're discussing. I can never pin them down with a definite yes or no. It doesn't seem coincidental that so many things started going awry around the same time I had a neuropathy diagnosis, things from head to toe. It's a strange, elusive disease. Have you noticed that your wife developed seemingly unrelated symptoms on a similar timeline as her neuropathy? It would be an interesting subject to study.

Jim

Interesting that you ask that. Linda asked me yesterday to do some research into inflammation, to understand it better. I did start doing some reading on it and I came across a reference to neurogenic inflammation. So I looked that up and found that there is likely to be a connection between the immune system (the initiator of inflammation) and the peripheral nervous system. And the original article said that neurogenic inflammation can cause migraine headaches, which leads me to suspect that Linda's severe headaches (which may or may not technically be migraines) might be related to her having neuropathy. Anyway, I have more to investigate along these lines but it seems like there may well be a connection between neuropathy and a lot of health problems. To answer your question though, I would say that although there have been other health things that have arisen since she got the neuropathy, most of them did not develop in conjunction with the onset of the PN, or even very soon after. If I find out more I'll let you know Jim. Hank

Hi Hank. Agreed on the headache part and neuropathy. I live it and feel differences between migraine, cervicogenic headaches and what I believe to be neuropathy flares through head and neck. You're such a good researcher.

In addition Hank, and you may find this interesting, I am 3 days into fasciliations in the back of only one thigh and up through my butt. It's not painful and I've had muscle twitching before but, on a much milder level that would leave a bit quicker. I've used heat for this as well but, it is stubborn! It's like the muscles are having a damn party in there! Quite annoying. Another neuropathy souvenir. 🤪

Any thoughts or suggestions would be welcomed by all.

@rwinney some folks in the Neuopathy FB group use magnesium lotion on their legs for a calming feeling. I’ve used it in the past and it helps keep the skin hydrated. I ordered the Life-Flo brand I found on Amazon. Hope your trip is pain free.

I also tried the same brand in a spray on magnesium oil thinking it would be easier to apply...yuck. It was sticky and did not feel good at all for me.

@jimhd and @jesfactsmon Here's one for you guys...although I do remember this happening prior to my neuropathy diagnosis, I have tongue flares which leave my tongue highly sensitive and painful to salt and acidic foods, almost raw and any textured food (ex: raisins) scraping over it hurts. I went to an ENT doc about 4 years back and no reason was derived. My neuro just listened, along with all my other symptoms, and culminated SFN. My tongue gets inflammed and feels like (I would think anyway) a cat's tongue....you know, dry, like sandpaper. I literally ice it down or let it wag in a cold cup of water to soothe it. I know, TMI!!! Lol! Hey - if we cant laugh, we cant live. Anyway, I regress from high sodium, acidic fruits, tomatoes, etc... and let it ride out but, it's not pleasant. I used to chalk my oddities up to me being a "delicate flower" but, now I go with that damn neuropathy of mine as the culprit! What a pain in the #*@!!! 🙃

@johnbishop Thanks for the suggestion. I mentioned earlier that I took a week off from the Protocol ( including megnesium) and I've been back on for 3 days now. Maybe that experiment added to the increased muscle twitching and more time back on will soon help. I will check out magnesium lotion also. Thanks a bunch and thank you for well wishes on my trip next weekend. As Jim mentions, distraction can be a huge help. That's what I'm hoping for because he is SO RIGHT! Have a nice day John. 😊

@rwinney I know you are too young to remember Burma Shave signs along the road. They were a real treat for us kids driving down the highway with mom and pop - reading the signs one at a time out load until you had the whole phrase. Loved those memories. Now if we could just plant some alongside the highway on your trip it could take your mind off of everything else 🙂
http://burma-shave.org/jingles/
Imagine driving down the road at 60 MPH and reading these signs one at a time to find out what the saying is. This one was one of my favorites from 1963.