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    • 40 minutes ago
      Mary Coleman likes your comment at
      Aside from the first year after your diagnosis, have you seen a registered dietitian for help managing nutrition and T1D?
      When I was put on insulin, the first dietitian I payed to see said I could eat whatever I wanted as long as I followed the set number of macros (carbs, protein, fats). The stupid diet had my blood sugars all over the map. She didn't care/listen when I told her milk, bread/pasta made me feel really sick. She said because I was on insulin I need to eat a high carb, low protein and low fat diet. What bad advice! Thankfully, I came to my senses and starting reading the experiences of other T1D's who were following the The Bernstein diet.
    • 2 hours, 12 minutes ago
      Robin Melen likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Labor Day weekend 2022 I was admitted to the hospital for passing out in a hotel bathroom. My blood sugar was over 400, so they had me on an insulin drip. I hit my head when I fell so they gave me a ct scan and found 3 cysts and a huge shadow the size of a baseball in my head. After they got my sugar under control they transferred me to a larger hospital with an MRI machine. Found stage 4 brain tumor. So had to have emergency surgery that Wednesday. Let’s just say the next 4 months was extremely stressful for me & my husband. I am on the mend now & hopefully my next mri will be stable or all clear! 🤞🤞
    • 2 hours, 13 minutes ago
      Robin Melen likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      My last hospitalization was in December 2020 after a delayed refill for my insulin put me in DKA. The worst part was that because it was at the height of Covid, my husband basically could only drop me off at the ER door. The hospital was less than ten minutes from our home, and it was only one night, but I may as well have been on the other side of the world.
    • 2 hours, 13 minutes ago
      Robin Melen likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      After my preliminary stay at Joslin in 1954, I've never spent time in a hospital because of having diabetes. A few other times for things like tonsils and babies, but I've been very lucky, and very healthy. Very grateful!
    • 2 hours, 13 minutes ago
      Robin Melen likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      The only time I have been hospitalized due to T1D was in 1970 when I suffered a diabetic hyperosmolar coma, due to ketoacidosis resulting from undiagnosed T1D. I was young and just back from an assignment to Korea in the USAF. I new something was wrong with me, but did not know what and I wanted to visit my family before exploring my issues through the USAF medical services.
    • 2 hours, 13 minutes ago
      Robin Melen likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      At 65yo, a T1D for 53 years and a pump user for 25 years I experienced what I own as a user error when my pump charger cord went bad and I miscalculated a manual shot. I awoke at 3am knowing I was going low and went to the kitchen to get some juice and remember noting after that until I awoke on the kitchen floor. I could not stand up and drug myself down the hall to get my phone. I called 911 and asked what time it was. It was 9am. I had broken my right ankle, fractured my left knee and torn the meniscus. Lots of lessons learned and after a month of rehab my family and I decided I could no longer live alone. Between T1D and being a fall risk I am in a senior assisted living. It’s not a bad ending but so many things go into our care. Prepare for your future and don’t be stupid!
    • 13 hours, 43 minutes ago
      KarenM6 likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Amazing!
    • 13 hours, 43 minutes ago
      KarenM6 likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      In 72 years with T1D I have been hospitalized once -- 1984 when BG got so low that my internal body temperature went from 98.6 to 93. That is the coldest I have ever been in my life, colder than 30 below 0 Fahrenheit in Midwest winters, cold Alps at 9,000 feet, and cold western US Ski areas at 9,000 feet. Brain does a wonderful instinctive thing at low BG to try to keep it's functions working so that you don't die. Thanks, brain.
    • 13 hours, 44 minutes ago
      KarenM6 likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Dang, now I jinxed myself 🙃
    • 16 hours, 47 minutes ago
      Bekki Weston likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Labor Day weekend 2022 I was admitted to the hospital for passing out in a hotel bathroom. My blood sugar was over 400, so they had me on an insulin drip. I hit my head when I fell so they gave me a ct scan and found 3 cysts and a huge shadow the size of a baseball in my head. After they got my sugar under control they transferred me to a larger hospital with an MRI machine. Found stage 4 brain tumor. So had to have emergency surgery that Wednesday. Let’s just say the next 4 months was extremely stressful for me & my husband. I am on the mend now & hopefully my next mri will be stable or all clear! 🤞🤞
    • 20 hours, 44 minutes ago
      Ahh Life likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      At 65yo, a T1D for 53 years and a pump user for 25 years I experienced what I own as a user error when my pump charger cord went bad and I miscalculated a manual shot. I awoke at 3am knowing I was going low and went to the kitchen to get some juice and remember noting after that until I awoke on the kitchen floor. I could not stand up and drug myself down the hall to get my phone. I called 911 and asked what time it was. It was 9am. I had broken my right ankle, fractured my left knee and torn the meniscus. Lots of lessons learned and after a month of rehab my family and I decided I could no longer live alone. Between T1D and being a fall risk I am in a senior assisted living. It’s not a bad ending but so many things go into our care. Prepare for your future and don’t be stupid!
    • 21 hours, 53 minutes ago
      Bill Williams likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Labor Day weekend 2022 I was admitted to the hospital for passing out in a hotel bathroom. My blood sugar was over 400, so they had me on an insulin drip. I hit my head when I fell so they gave me a ct scan and found 3 cysts and a huge shadow the size of a baseball in my head. After they got my sugar under control they transferred me to a larger hospital with an MRI machine. Found stage 4 brain tumor. So had to have emergency surgery that Wednesday. Let’s just say the next 4 months was extremely stressful for me & my husband. I am on the mend now & hopefully my next mri will be stable or all clear! 🤞🤞
    • 22 hours, 17 minutes ago
      ConnieT1D62 likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      So gratifying to see so many "no" responses, way to go everyone!!
    • 23 hours, 15 minutes ago
      T1DGJ likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      After 56 years of T1D (34yrs of injections up to 5 / day), my buttocks have some scar tissue. The description of lipohyertrophy doesn't match with my scar tissue. I don't have hard lumps, just areas that feel firmer under the skin. I also have more problem with sunken spots (atrophy) in my 'favorite' injection spots. Dealing with it is basically trying to avoid those spots. If a site is not absorbing, I take a hot shower or do moderate exercise to increase blood flow to the area. BGs will plummet though so I have to be cautious. I also started using alternative infusion sites and also have considered a variable angle infusion set, but have not yet tried it.
    • 23 hours, 16 minutes ago
      T1DGJ likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      I started to but then switched to my upper thighs and am able to rotate over a much greater surface area.
    • 23 hours, 16 minutes ago
      T1DGJ likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      I stopped using those sites and paid more attention to rotation of available ones.
    • 23 hours, 39 minutes ago
      Greg Felton likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      The only time I have been hospitalized due to T1D was in 1970 when I suffered a diabetic hyperosmolar coma, due to ketoacidosis resulting from undiagnosed T1D. I was young and just back from an assignment to Korea in the USAF. I new something was wrong with me, but did not know what and I wanted to visit my family before exploring my issues through the USAF medical services.
    • 23 hours, 40 minutes ago
      Greg Felton likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Last time I was in the hospital due to diabetes was within 6 months of first starting on an insulin pump. Approximately 32 years ago
    • 23 hours, 40 minutes ago
      Greg Felton likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      No, I have not been hospitalized in the last three years, it has been 67 years since I’ve been hospitalized for diabetes related issues.uu
    • 23 hours, 40 minutes ago
      Greg Felton likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      I’ve never been hospitalized because of T1D other than when the endo started me on insulin on 1973 to learn about injections and diet.
    • 23 hours, 49 minutes ago
      jo likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      In 72 years with T1D I have been hospitalized once -- 1984 when BG got so low that my internal body temperature went from 98.6 to 93. That is the coldest I have ever been in my life, colder than 30 below 0 Fahrenheit in Midwest winters, cold Alps at 9,000 feet, and cold western US Ski areas at 9,000 feet. Brain does a wonderful instinctive thing at low BG to try to keep it's functions working so that you don't die. Thanks, brain.
    • 23 hours, 51 minutes ago
      jo likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      So gratifying to see so many "no" responses, way to go everyone!!
    • 23 hours, 51 minutes ago
      jo likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      First time two years ago when I was diagnosed with T1D! Was in DKA and had no idea why I was so sick. Six days! Second time just overnight when I couldn't get my sugars down (I was still in that early learning phase). And at least one stop of a couple of hours at the ER - same reason - high sugars I couldn't figure out. Luckily I seem to have all figured out now! Whew!
    • 23 hours, 51 minutes ago
      jo likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Labor Day weekend 2022 I was admitted to the hospital for passing out in a hotel bathroom. My blood sugar was over 400, so they had me on an insulin drip. I hit my head when I fell so they gave me a ct scan and found 3 cysts and a huge shadow the size of a baseball in my head. After they got my sugar under control they transferred me to a larger hospital with an MRI machine. Found stage 4 brain tumor. So had to have emergency surgery that Wednesday. Let’s just say the next 4 months was extremely stressful for me & my husband. I am on the mend now & hopefully my next mri will be stable or all clear! 🤞🤞
    • 23 hours, 52 minutes ago
      Janis Senungetuk likes your comment at
      In the past three years, have you been hospitalized due to T1D?
      Labor Day weekend 2022 I was admitted to the hospital for passing out in a hotel bathroom. My blood sugar was over 400, so they had me on an insulin drip. I hit my head when I fell so they gave me a ct scan and found 3 cysts and a huge shadow the size of a baseball in my head. After they got my sugar under control they transferred me to a larger hospital with an MRI machine. Found stage 4 brain tumor. So had to have emergency surgery that Wednesday. Let’s just say the next 4 months was extremely stressful for me & my husband. I am on the mend now & hopefully my next mri will be stable or all clear! 🤞🤞
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    Have you (or your loved one with T1D) been diagnosed with peripheral neuropathy in your feet?

    Home > LC Polls > Have you (or your loved one with T1D) been diagnosed with peripheral neuropathy in your feet?
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    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    22 Comments

    1. sweetcharlie

      The Doctor said just a touch of it.. Age=91… T1D about 70 ..

      10
      2 months ago Log in to Reply
    2. Lawrence S.

      No, not diagnosed. But, if I don’t keep up my daily exercise, I feel it.

      2 months ago Log in to Reply
    3. Trisha Oldenkamp

      It’s mild and has been pretty stable for several years. My endo said only a small percentage of well controlled Type 1s get it and I’m one of them. A neurologist said to take alpha lipoid acid supplements to help.

      1
      2 months ago Log in to Reply
    4. Gary Rind

      had terrible pain in my feet. endo prescribed gabapentin which did nothing except make me dopey. found out about alpha lipoic acid, started taking that and the pain was gone within a week. it’s been 20 years and it still works great, no pain at all!

      1
      2 months ago Log in to Reply
    5. Kelly Wilhelm

      I have very very mild neuropathy in my feet (1 on scale of 1-10) that was “accidentally” found while working on another issue. No issues with it, so far.

      2 months ago Log in to Reply
    6. Henry Renn

      I notice on most questions posed by T1D Exchange that there isn’t any delineation for length of time respondents have had Type 1.

      2
      2 months ago Log in to Reply
      1. sweetcharlie

        Thats why I usually give the years T1D and Age now..

        1 month ago Log in to Reply
    7. Marty

      My doctor didn’t use that term, but did notice some loss of sensitivity to vibration. Luckily it’s not a problem, so far at least.

      1
      2 months ago Log in to Reply
    8. Ahh Life

      Perhaps a soupçon of it. The podiatrist noted a slower nerve response in one leg versus the other. But no pain, no tingling, no impairment, and consequently, no intervention after 72 years around the diabetic track. 🙆‍♂️

      3
      2 months ago Log in to Reply
    9. Mary Halverson

      Not in my feet and not yet diagnosed, but my calves have constant surface nerve twitching. “Fasciculation” is the term I’ve found for it. I’ll see a neurologist soon & hopefully find an answer.

      2 months ago Log in to Reply
    10. pru barry

      It’s been a blessing in disguise. Walking has always been one of my favorite ways to spend time, hours and hours of it. Until recently, neuropathy has never made it hard. I’m working on year 69 since diagnosis and taking insulin, and think maybe some of my beginning to stumble is just old age. So now I walk with a bit of a vengeance, and tons of determination. I think there’s a huge component of brain-muscle memory involved. Losing keys is one thing. Losing the ability to walk is another!

      2
      2 months ago Log in to Reply
    11. Bob Durstenfeld

      I have autonomic neuropathy that affects my stomach and bladder as well as some neuropathy in my inner thighs and periformis syndrome that affects my left foot.

      2 months ago Log in to Reply
    12. Trina Blake

      I answered “other”. At first – using the little filament tester – I was Dx’d with neurapathy in my feet. I suggested they check beyond the balls of my feet. Then ticklish as ever. I then stood up, explained that I was a retired professional ballet dancer, demonstrated barefoot pirouettes (some contemporary pieces are done barefoot) that explained the very strong and tough calluses. Fortunately I was able to avoid the standard “you’ve got to manage your T1D better” by my prompt “lecture” and demonstration of classical ballet. Still doing well.

      3
      2 months ago Log in to Reply
    13. Steven Gill

      Have a brother diagnosed T1d 25 years ago, he “has some numbness.” Been maybe 15 years ago, but also a dry alcoholic, moderate to heavy smoker, but very active, I’m sure that helps.

      An adopted cousin (not related by blood but recently bonded) has neuropathy in feet, gastroparesis, and a multitude health concerns (weight, copd, heavy smoker…), and even now out of control glucose. A family friend (TYPE2) discussed her feet problems, and loss of muscles from neuropathy.

      I know for a fact the other causes of neuropathy we can stress ourselves with: non diabetic mother had neuropathy in hands and feet-possibly attributed to weight, BP, smoking, and a poor diet. A friend possibly died resulting from lack of care for a foot ulcer (A week after 911 was called from bleeding) likewise neuropathy in his feet. He was a real heavy smoker, heavy drinker, non active with a poor diet: non diabetic.

      Diabetes alone can be as leading cause of neuropathy, add smoking, poorly controlled BP, bad diet, weight, and inactivity we can almost guarantee the result. I want diabetes to be my only hazard, and a minor one at that.

      1
      2 months ago Log in to Reply
    14. Jian

      I have had neuropathy for about 13 yrs, painful at first and took gabapentin for yrs. but no longe painful the last 3 yrs just numbness and tingling – I take aphalipoic acid 600 mg daily.

      2 months ago Log in to Reply
    15. ConnieT1D62

      Yes – despite years of “good control” and never having been a smoker or an excessive or careless user of alcohol I developed peripheral neuropathy in my feet and hands. At around 40 years into having lived with T1D in my body since early childhood I noticed subtle sensitivity changes in both my feet and hands, not painful just “different” and “weird”.

      Plus 30 + years of being a nurse and pumping a manual sphygmomanometer bulb to obtain blood pressures on several hundred patients thousands of countless times over the years didn’t help. As a result I have nerve, tendon, fascia, and muscle damage in my hands and fingers. The muscle weakness affects my hand strength and grip, and fine motor finger skills.

      I opted to decline surgery when it was recommended and chose occupational therapy, hand stretching and strengthening exercises, acupuncture and chiropractic adjustments instead. I still have good use of my hands. However, I as I age I experience increased muscle wasting at the base of the thumbs and overall numbness in my fingers. At age 69 I can no longer tie shoelaces or button small sized buttons. I keep the nerve flow energy in my hands activated and flowing by creative visualization, positive affirmations, and finger, hand, wrist and arm movement exercises and self-massage techniques.

      1
      2 months ago Log in to Reply
      1. Ahh Life

        Connie—I could have written the same thing, word for word, myself. While not particularly empathetic, the joint specialist (what a title) at least had some humor for me a week ago when he said. “Hey, after 75 trips around the sun, you gotta expect joints and things to go out.” At least I could laugh. Maybe the best and only therapeutic. 🙃

        1
        2 months ago Log in to Reply
    16. mbulzomi@optonline.net

      Ok, how do you answer a “NO”?

      2 months ago Log in to Reply
    17. ConnieT1D62

      I answered YES yesterday and wrote about my experience with peripheral neuropathy and joint damage in my hands. I also have peripheral nerve and joint damage in both feet affecting nerves, tendons, muscles, and bones resulting in clawed toes and structural changes in the shape of my feet.

      In earlier phases of life I was active in dance – ballet, jazz, modern, folk dancing, tap, flamenco – for many years from childhood into my 50s. Plus 30 years of being on my feet as a nurse lent itself to wear and tear on my feet.

      In 2004 I was diagnosed with early stage Charcot neuro-arthropathy changes in my feet after being mistakenly misdiagnosed with “sprain and strain injury” and “gout” by four different MDs. An astute orthopedic MD did further X-rays, bone scans, and MRI testing to determine that it was “early phase Charcot neuro-arthropathy” and covered for his fellow MDs who missed the proper diagnosis “because we rarely see and recognize this kind of damage in such early stages ” .

      My feet are now stable and I wear sensible shoes with custom orthotics for comfort and to accommodate the structural changes in my feet.

      2 months ago Log in to Reply
    18. Wanacure

      The filament test revealed partial neuropathy in my left foot some years ago. Then in right foot also. Doesn’t seem to interfere with my walking. But before that was diagnosed I had terrible lower leg pain. I tried over the counter insoles but nothing worked. Finally I bought custom orthotics from a retailer experienced in helping diabetics and “extra depth” shoes to accommodate them. What relief! Compression stockings also helped. Lesson: If you’re jogging or running 3 miles every other day on hard surface, don’t expect those running shoes to adequately cushion your feet after 6 months of use.

      2 months ago Log in to Reply
    19. AnitaS

      I haven’t but a T-1 cousin of mine did

      2 months ago Log in to Reply
    20. T1D4LongTime

      T1D 56 years. Diagnosed age 6. Age 11-13 I had severe neuropathy on the bottoms of my feet especially at night. Felt like branding irons. For some unknown reason, the neuropathy resolved and has never returned.

      1 month ago Log in to Reply

    Have you (or your loved one with T1D) been diagnosed with peripheral neuropathy in your feet? Cancel reply

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