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    • 34 minutes ago
      Wanacure likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      Being on Medicare and required to see my Endo. every three months, my next appointment is made prior to departure from my Endo's office.
    • 35 minutes ago
      Wanacure likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      If I were not on Medicare, it would be difficult to get an appointment within 3 months, even in an emergency. In an emergency, they would assign me a nurse practitioner to see. It is possible to contact them through their "portal." Whether I get a timely response depends on whether there is a reliable nurse to respond.
    • 50 minutes ago
      Wanacure likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      When I saw my endo a year ago, I wasn't able to make an appointment 6 months later because all available appointments were fully booked. I have to see her CDE who has more availability in order to meet Medicare requirements for quarterly visits. Many, many healthcare providers in my area burned out and quit during Covid. I injured my knee badly last June and can't get a consult with an orthopedic surgeon until May due to the backlog of people needing help. I'm on crutches until then. My sports medicine doctor stopped practicing medicine last month. Our healthcare system is in crisis with no solution in sight.
    • 51 minutes ago
      Wanacure likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      On hold or actually talking about the issue and calling back to ensure someone follow's up as everyone seems to be over their head. Honestly, it varies. It can take considerable time just to raise the visibility of an issue, then the follow up can take weeks/months and patience to resolve. Another problem is patients without the cognitive skills for follow-up. These days i doubt anyone pays attention to them.
    • 3 hours, 12 minutes ago
      Wanacure likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      I try to make my appointment for my next appointment when I check out. The scheduler always asks maki g it easier to remember. If I was to forget there would be a wait to get back int the rotation.
    • 10 hours, 20 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      Before the onslaught of Type 2 Diabetes, I, as a T1D, could get an appointment almost anytime I needed one. Now, I cannot get an appointment within 3 months, which is the time within I must see rhe doctor for Medicare benefits. My doctor cancelled 2 (half ) of my sppointments last year. Caused ma a lot of problems. I live in Florida, a place where modern medicine does not seem to have reached yet.
    • 10 hours, 21 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      I routinely see my Endo every three months. At the end of my appointment I schedule the next quarterly meeting date. But if I ever have to reschedule it, then it takes anywhere from two to four weeks to find a time that works for us.
    • 12 hours, 17 minutes ago
      Mike S likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      It all depends on the urgency of my needs. I’ve gotten in the next day before, but those days may be gone! It also depends on who I see. But these days, even the PA is often booked. Of course, cancellations happen, so that can be a factor as well.
    • 12 hours, 33 minutes ago
      Jeff Marvel likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 23 hours, 44 minutes ago
      Gerald Oefelein likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 1 day, 3 hours ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of the 3-4 hours is way ting on a phone
    • 1 day, 3 hours ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 4 hours ago
      Wanacure likes your comment at
      When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
      The resources I use in managing my glucose levels once sick is my own personal experience after living with t1d for 46 years
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Switching to Medicare has created (seemingly) endless hours and day making this transition with all things diabetes related. We’re still in the midst of making this ā€˜delightful’ change. This week we learned that Medicare covers Either CGM stuff OR glucose test strips. Thank goodness that God is sovereign over all these details. He helps me walk through these challenges without despair.
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The last 3 months have been filled with frustrating phone calls now that I switched back to traditional Medicare from a Medicare Advantage plan. I have been fighting to get strips authorized in addition to CGM- they did not authorize them because I had no proof that I had a meter!! Crazy making! I had to write an appeal letter in order to get them, but finally got it worked out. I also had some pump replacement issues, trouble getting insulin, etc.
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Much too much time! Part of it, I know, is my own fault, for not keeping anxiety at bay when I have to sort out which plan will work best, annually. But it is something I dread, every single year. When I call to get some help understanding, the people are almost always very nice, but I have had times when the information was incorrect or not explained clearly. I usually commiserate with the person on the phone for having such an annoying system, and agreement seems to rule the day. But I never chose to make sorting out insurance management a career!
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 1 day, 4 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 1 day, 5 hours ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I’m a reasonably satisfied MDI user with Lantus and Fiasp. I’ve looked into getting a pump but honestly, until I find one that does everything I want, I’ll probably hold off. My wish list for a pump: 1) no tubes 2) works well with Fiasp 3) controls that allow me to stay at my target of 70-90 mg/dl all night long.
    • 1 day, 5 hours ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      MDI for the past 60 years and do not see any alternative that I would prefer. The needles for my pens are so thin and sharp that they are painless (a far cry from the lancets I once used). chiefly, I am glad not to have to deal with setting up a pump and. Although I love my libre, I am not good candidate for having devices affixed to me. If my insulin delivery got interrupted they way i have interrupted my cgm service, I would have been in trouble. Furthermore, I have a track record of having both mechanicall and electronic things malfunction. (Seriously, I sometimes act as a beta-tester for technology folks. Maybe I push to many buttons?)
    • 1 day, 5 hours ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I've had Tandem x2 and Dexcom since September. Previously on Medtronic for around 15 years. Grew to HATE the sensors and switched before the warranty on my last Medtronic was up. So far, I absolutely LOVE the Tandem and the Dexcom. I'm disappointed, however, in the amount of waste and plastic that this pair creates. Of course there will always be plastic waste from any pumps/sensors, but the amount of non-reusable stuff for insertions is ghastly.
    • 1 day, 5 hours ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      Have your doctor prescribe the syringes with .5 unit increments instead of the 1 unit syringes. Not quite a .1 unit which you are hoping for, but .5 is better than 1 unit increments.
    • 1 day, 6 hours ago
      Ahh Life likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
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    Have you (or your loved one with T1D) been diagnosed with neuropathy?

    Home > LC Polls > Have you (or your loved one with T1D) been diagnosed with neuropathy?
    Previous

    If you use a CGM system that does not typically require calibration, have you ever been prompted by the system to calibrate your sensor? If so, how many sensors in the past 12 months have required a calibration?

    Next

    Which of the following options best describes your primary insulin delivery method (the one you use most) and your most recent A1c? (Note: 7% is equivalent to 53 mmol/mol)

    Sarah Howard

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    21 Comments

    1. n6jax@scinternet.net

      A little on my feet…Sweet Charlie

      1 year ago Log in to Reply
    2. gary rind

      Had it pretty badly in my feet, a lot of pain. Take Alpha Lipoic Acid daily and the pain disappeared within a week and has never returned.

      1 year ago Log in to Reply
      1. Patricia Kilwein

        I’ve been taking alpha lipoic also! It really works great for me.

        1 year ago Log in to Reply
      2. lis be

        alpha lipoic acid helps me out too.

        1 year ago Log in to Reply
    3. George Lovelace

      Hard to believe that 72% Replied No, I’m not currently bothered by it (T1 57 yrs) but it seems like it is a part of every Dmers Life.

      1 year ago Log in to Reply
      1. Ken Raiche

        47 years and counting and fortunately nothing as of yet. That said I do get the odd tingling at times while sleeping and I’m thinking it has to do with my blood circulation or the lack there of. šŸ¤ž it doesn’t progress into anything more severe.

        1 year ago Log in to Reply
    4. connie ker

      My T1D husband had neuropathy in his older years. The worst part was how it affected his balance. To combat this, we had 3 walkers he used for several years : one upstairs, one downstairs, and a rollator for outside kept in the garage. He also took Alpha Lipoic Acid and when we went out, he used his downstairs walker which folded up. He renewed his interest in duplicate bridge and enjoyed the challenge.

      1
      1 year ago Log in to Reply
    5. Bob Durstenfeld

      I was fine for the first 50 years with T1D, it is only in one area and annoyed me most at bedtime. Gabapentin helps.

      1 year ago Log in to Reply
    6. Joan McGinnis

      DX 25 yrs after diagnosis, took Gabapentin for 9 yrs. no
      longer painful. off Gabapentin, just numbness in feet and lower legs now.

      1 year ago Log in to Reply
    7. TEH

      I have felt the sharp pain in my feet like I would imagine what stepping on broken glass or hot coals might feel like. It was diagnosed as Peripheral Neuropathy. I took Metanex, a vitamin B supplement and it worked for a while but was expensive. My Peripheral Neuropathy pain is short lived like 15 minutes and gone, unlike strained muscle pain which lasts hours.

      I’m considering alpha lipoic acid thanks to others that have commented here. Thanks!

      1 year ago Log in to Reply
    8. Lynn Smith

      Yes, after 54 years of T1, I now have neuropathy. It’s frustrating since my control has always been good. I can only remember a few short periods when it was not. So now I am taking Metanx, a supplement they are now prescribing and it has helped.

      1 year ago Log in to Reply
    9. Germaine Sarda

      I have had T1 for 48 years, my brother has had it for 35 and my other brother for 33. My brother who has had it for 35 years developed neuropathy years ago and has always taken very good care of himself. My other brother and I have not developed it. It is a mysterious and frustrating disease.

      1 year ago Log in to Reply
    10. Melinda Lipe

      Not officially, so I answered No.
      I have had some numbness in one foot for some years, it comes and goes with my blood sugar excursions. I asked for testing/diagnosis but that was inconclusive.

      1 year ago Log in to Reply
    11. Marty

      I answered “yes” because I’ve lost a bit of sensitivity to vibration in my feet, something my doctor tests annually. It’s been 30 years since my diagnosis. I feel very lucky that’s my only complication. Knock on wood.

      1 year ago Log in to Reply
    12. Patricia Kilwein

      I’ve been taking alpha lipoic acid for years now the max allowed. It helps heal nerve endings. For me it has really helped.

      1 year ago Log in to Reply
    13. Pauline M Reynolds

      No, but the bottom of my feet feel like plastic. Also, for 10 years, have what I call “the itch from hell” which periodically crosses the length of a foot for about 10 minutes. All I can think of is, “It’s not pain, it’s not pain.”

      1 year ago Log in to Reply
      1. ConnieT1D62

        What you describe are some of the signs and symptoms of peripheral neuropathy. Neuropathy does not necessarily cause pain. It can manifest as sensations of tingling, numbness, itching, cold, burning, a feeling of tightness like you are wearing tight gloves or socks – not all of these, but some of these may be what a PWD experiences as a result of peripheral neuropathy. It develops insidiously over time and the longer you live with T1 diabetes the more likely it is that you can and will develop some form of neuropathy. It often does happen in the hands and feet, but can affect other organs and body parts as well.

        1
        1 year ago Log in to Reply
    14. Mig Vascos

      No, after more than 50 years. I’ve always s exercise and as I age (82) I have increase exercising my legs and feet even when I’m sitting down watching tv. I think that helps.

      2
      1 year ago Log in to Reply
    15. ConnieT1D62

      I was in denial for years about the insidious nature of neuropathic changes taking place in my body affecting peripheral nerve endings in the joints and muscles of my fingers, hands, toes, and feet. Neuropathy can affect very organ and tissue system in your body, including heart, eyes, ears, GI tract, sexual function. Even with excellent BG control and lots of physical activity, the longer you live with T1D it is likely that some form of neuropathy is happening as you age with diabetes.. True, alpha lipoic acid can help to promote & preserve healthy nerve function in some but it is not cure for neuropathy that has already progressed.

      Most health care providers don’t diagnose it in the early stages or educate us about it because:
      (1) it is not on their radar unless we mention it to them. Often the extent of their knowledge & experience about peripheral neuropathy is performing an obligatory monofilament screening test, that doesn’t really diagnose or determine anything except a loss of sensation and doesn’t really give a true picture of any overall neuropathic damage until it is well advanced.
      And: (2) PWD patients don’t mention it because we think it is nothing to worry about OR we are afraid to say anything about it to them because we are so afraid or ashamed of being diagnosed with neuropathy. Denial doesn’t help.

      Neuropathy is what it is and it happens to many of us, if not most of us, at some point. It is not the end of the world – it can be lived with and requires the ability to accept, adapt, and adjust one’s self-care routines.

      1
      1 year ago Log in to Reply
    16. Wanacure

      After reading these comments, I think first signs of neuropathy were loss of balance and diminished hearing after 50 yrs T1D. Yet I’ve only been diagnosed with neuropathy in a couple of toes on one foot. More recently I’ve noticed erectile dysfunction. I do balance exercises which really help, so do not use cane or walker. I now wear hearing aids. For ED viagra and Cialis are useless. I have not tried testosterone ointment or cream or anabolic steroids.

      1 year ago Log in to Reply
    17. Cmore

      Yes, but mine was caused by chemotherapy.

      1 year ago Log in to Reply

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

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