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    • 1 hour, 20 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I want a thumbs down icon!
    • 1 hour, 20 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I seldom have any questions other than RX refill request which I submit through the patient portal. If I do have treatment questions, I typically do my own research, and if not satisfied with what I find out, I submit a question in the portal.
    • 1 hour, 20 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      When I come up with a question between visits, I usually just do some research.
    • 3 hours, 33 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 3 hours, 33 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Sorry. Of course I store unopened in frig. Opened in my room as I use it up in 30 days
    • 3 hours, 34 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      No, I keep it in the oven! ;) Same answer as the last time they asked this ridiculous question!
    • 4 hours, 16 minutes ago
      Becky Hertz likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 5 hours, 39 minutes ago
      Bruce Schnitzler likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 7 hours, 36 minutes ago
      alex likes your comment at
      Here’s What You Need to Know About the Dexcom G7
      This article explains the Dexcom G7 features in a clear and easy way, especially for people new to continuous glucose monitoring. Very informative and helpful. Sportzfy TV Download
    • 22 hours, 59 minutes ago
      KarenM6 likes your comment at
      Have you ever been told you couldn’t physically do something because you live with diabetes?
      Long time ago - told there were certain occupations I would not be allowed to do because if T1D. Pilot, air traffic controller, military, etc.
    • 23 hours, 2 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I have been told many times "YOU CAN'T EAT THAT!" ONLY to frustrate them and eat it anyway and then bolus accordingly.
    • 23 hours, 2 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 23 hours, 3 minutes ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Lol hell when haven't they. Lol
    • 23 hours, 11 minutes ago
      KarenM6 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 1 hour ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was only 2 when Diagnosed 70 years ago. My small town doctor admitted he didn't know much about T1D, and fortune for my parents and I he called what is now Joslin Clinic, and they told him how much insulin to give me. He taught my parents, who then traveled over 350 miles to Boston, to learn about how to manage T1D. My doctor learned more about T1D, and was able to help 2 other young men, that were later DX with T1D in our small town. I went to Joslin until I turned 18 and returned to become a Joslin Medalist and participated in the research study, 20 years ago. Still go there for some care.
    • 1 day, 1 hour ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was 7 when things changed in my home. My older brother was hospitalized for 2 weeks. When he came home, we no longer ate the way we had before. This was 1956. Dessert alternated between sugarless pudding or sugarless Jello. I learned that bread and potatoes had carbohydrates and that turned to sugar. There was a jar in the bathroom. It seemed my brother was testing his urine every time he went in there. There was a burner and pot on the stove designated for boiling syringes. I watched my brother give himself shots and I remember how hard it was to find someone to manage his care if my parents had to travel. Diabetic Forecast magazine came in the mail each month and there were meetings of the local diabetes association that my mother attended religiously. My brother got a kidney and pancreas transplant at age 60 and before he died lived for 5 years as a non-diabetic. A few years later I was diagnosed. Sorry he was not able to make use of today’s technology. I often wonder what he and my late parents would think about me, at age 66, being the only one in the family with type 1.
    • 1 day, 1 hour ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 5 hours ago
      kilupx likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      My brother was type 1 since an early age. I was only diagnosed in my late 40s
    • 1 day, 7 hours ago
      Phyllis Biederman likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 7 hours ago
      Bill Williams likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 8 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was diagnosed in 1976 at the age of 18 while in college. One weekend, I was drinking a lot of water and peeing frequently. I remembered having read a Reader's Digest article on diabetes, and I told my friends I thought I might have it. Two days later, the diagnosis was confirmed.
    • 1 day, 8 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 8 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 1 day, 8 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      It was 35 years ago for me. I had no experience with T1d. I was starting to show symptoms and my sister-in-law quickly researched T1d and told me what she found. I went to my GP a week or two later. My BG was over 600. He sent me to the hospital right away. Blood test confirmed it.
    • 1 day, 8 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I only knew a little . That is why I give grace to others who do not know anything or have misconceptions.
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    In honor of National Neuropathy Awareness Week, have you been diagnosed with neuropathy? If you have tips for how to manage neuropathy, please share them in the comments.

    Home > LC Polls > In honor of National Neuropathy Awareness Week, have you been diagnosed with neuropathy? If you have tips for how to manage neuropathy, please share them in the comments.
    Previous

    How often does your T1D health care provider screen for neuropathy with a monofilament, tuning fork or pin prick on your bare feet?

    Next

    If you wear a CGM, do you look at the Glucose Management Indicator (GMI) available in many CGM reports? If so, is your GMI typically higher than, lower than, or equal to your A1c?

    Sarah Howard

    Sarah Howard has worked in the diabetes research field 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.

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    12 Comments

    1. Grey Gray

      I smoke alot of medical marijuana. Didn’t care for Lyrica and I find nuerontin messes with my head before I get to a theraputic amount. I know the pot works well because my legs go through hell if I run out.

      3
      5 years ago Log in to Reply
      1. Tere North

        I use a CBD cream on the balls of my feet. So far, it is working, but I know the next step will be in your direction.

        5 years ago Log in to Reply
    2. Richard Vaughn

      My neuropathy in my feet and legs is bad. I have numbness and poor balance. I fell down frequently, but my podiatrist advised me to have physical therapy. With six weeks of PT in late 2018 I stopped falling down.
      I also have a neuropathic bladder. It is difficult to urinate. I have been taking two medications for many years to help. It was much worse last year and my urologist implanted a device called Uro Lift. I had that done on 4-4-21. I am waiting to see if it will help me.

      2
      5 years ago Log in to Reply
    3. Kristine Warmecke

      I have no feeling in feet or hands, it was much worse before my oncologist decided to stop my my chemo early because it. I’m just happy I regained feeling in my arms & legs.

      5 years ago Log in to Reply
    4. rick phillips

      I have become a big fan of walking sticks. Urban Poles are my favorite

      1
      5 years ago Log in to Reply
    5. ConnieT1D62

      I first experienced symptomatic neuropathic changes from peripheral neuropathy in my hands and feet about 25 years ago. Initially it felt like sharp stabbing electric shooting pain that would intermittently come and go. My PCP at the time prescribed Neurontin – which did absolutely nothing and then a trial of Lyrica which just masked any feeling of sensation in my limbs and made me feel stoned. To tell the truth, except for brief episodes of intense stabbing pain the discomfort was minimal and eventually phased out.

      I still have neuropathy in my hands and feet resulting in residual numbness and altered sensation along with subtle muscle changes. The meds were not helpful at all to restore or repair damaged nerve function. Why would I want to mask any intact feeling that I have left in my hands and feet? I have learned to adapt and live with it.

      2
      5 years ago Log in to Reply
    6. Christina Trudo

      started in my feet at about age 33,about 22 years post diagnosis. Now it is 37 more years later and it has progressed some. More lately, actually. The pain is only periodic, and I have not wanted to try Lyrica, and Neurontin makes me dizzy. What has helped somewhat is taking Alpha Lipoic Acid, a supplement. Many of my doctors over the years are familiar with this and approve it. When I do get pain it is normally overnight and although it is fierce, I have learned to sort of sleep through it which helps a lot (compared to staying awake all night anticipating the next red hot poker stabbing into my foot! ) I’ve also probably got some esphageal neuropathic changes, and just recently a CAT scan suggested possible bladder neuropathy, though I have no symptoms of that. I expect such changes will continue.

      5 years ago Log in to Reply
    7. Angela Naccari

      I was diagnosed slight neuropathy in my feet last month for the first time in 59 years of Type 1. Just a little bit numbness every now and then right now. No treatment yet.

      1
      5 years ago Log in to Reply
    8. Maureen Helinski

      I had Neuropathy, but not diagnosed, years ago, but when I got my BGs in control range it all went away.

      5 years ago Log in to Reply
    9. Scott Doerner

      Yes, but in 1 toe, do like I do with all the others. Inspect bottom and between toes and keep clean

      5 years ago Log in to Reply
    10. Ahh Life

      No neuropathy for first 60-65 years. Then developed PDN in both legs. Pain not an issue, but stability and falling is. As suggested, CBD works well at lessening symptoms, and PT works well as strengthening the right muscles to preclude falling or to fall properly. (Yes, you can learn to do it.). Rest seems to restore proper functioning of legs. (I used to measure how many miles I would walk; now I measure how many minutes. Sigh!)

      Additionally, while not categorized as neuropathy, gastroparesis is a nerve failure issue, best controlled by me with extended boluses and 5.5mg Metoclopramide to block the nerve signal to the brain. ✍(◔◡◔)

      5 years ago Log in to Reply
    11. Cheryl Seibert

      As a young pre-teen (50 years ago), I developed neuropathy in my feet, but was not diagnosed (I only had a pediatrician’s care who really didn’t know much about T1D up until age 13). By age 12 or 13, it had went disappeared, so I marked “Other”

      5 years ago Log in to Reply

    In honor of National Neuropathy Awareness Week, have you been diagnosed with neuropathy? If you have tips for how to manage neuropathy, please share them in the comments. Cancel reply

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