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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 7 hours ago | Replies (6020)

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@johnbishop

@njc, I am glad you decided to step out of your comfort zone and join us here on Connect! We are a mixed bunch of all ages and all ages are welcome. Our mission is to connect members with other members who share similar symptoms so that we can learn from each other. I'm 77 going on 80 so not that far behind you. My goal in life is to learn at least one new thing every day...yup, you guessed it, sometimes I learn the same thing more than once 🙂 Based on some of the symptoms you mentioned. you may also be interested in reading and participating in the following discussions:

Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/
Late Stage Primary Sjogren's Syndrome: https://connect.mayoclinic.org/discussion/late-stage-primary-sjogrens-syndrome/
Lupus diagnosis need help: https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/

You mentioned you have been a Type 1 diabetic for 13 years. Have you made any lifestyle changes to try and help with your diabetes or other symptoms?

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Replies to "@njc, I am glad you decided to step out of your comfort zone and join us..."

Many. I have been on an insulin pump for 9 years and an independent continuous glucose monitor for about a year and a half. Sad to say, I was not given very good instructions on how to count carbs until I received my insulin pump. I “religiously” count carbs and keep track of what I eat. But, blood glucose is not only about carbs, but stress, sickness, medications and exercises as well. Those things are difficult to assign specific impact on glucose. My last A1C was an acceptable 6.5. Over the next few years after becoming diabetic, I lost 50 lbs and then maintained a stable in range BMI. But, I began having swallowing problems in 2016 and lost over 25 lbs in 6 months. I had trouble swallowing meats, raw vegetables, pills and liquids. I was aspirating liquids at times and even saliva as I slept with the result of much coughing. After evaluation by ENT, GI and Neurology doctors with blood tests, CT’s, swallowing evaluations, EMG and nerve conduction studies, though the swallowing difficulties were documented, no diagnosis or cause could be found. I was instructed to have a mechanical soft diet, given drinking instructions, and eventually, was told to use thickener in my drinking liquids. Though there are various thickener types, the only one that I could tolerate was a modified food starch thickener. Of course, the food thickener is pure carbs and has had a significant impact of my blood glucose levels even though the amount of carbs is always counted when dosing insulin. With regards to other diet modifications, because I have had pills lodge in my throat and esophagus, I only take medication in liquid form or pills that can be crushed and mixed with applesauce. Some pills warn that they are not to be crushed. I have had gel cap medication soften and adhere to my throat. Some foods I purée and freeze in serving sizes with carbs identified. I have restrictions associated with the following diets: GERD (spices, acids, fats, caffeine, chocolate), swallowing, kidney (low sodium, potassium, phosphorous, NSAIDS, herbal supplements) and diabetic. Lumping all the diets together, I call it the AIR diet: All Ingestion Restricted. Therefore, finding things I can or want to eat is a constant challenge. I regained 10 lbs after a warning that if I lost more weight, I might have to have a PEG stomach feeding tube. Now my weight is stable. I thank God that I have a supportive husband of 60 years. I apologize for such a long reply. As in many of our lives, things are complex and have no simple answers. God bless you and all those who work to support this group.