Although I am diabetic (II), my neuropathy does not seem to be connected to the Glucose levels. Rather, my pancreas is enlarged (pancreomegaly) and leatherized, so I do not produce the necessary insulin. The cause seems to be my Gelsolin (AGel or GSN) Amyloidosis AL, including my RyR2 and FKTN mutations. I can pretty well keep my glucose within the target level except for a few minutes per day, using Novolin and my Abbott LibraView sensors and reader. But when the neuropathy hits in my hands, feet, crotch and face, a quarter-teaspoon of kitchen turmeric in a small glass of warm water usually handles it for a few hours.
Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.
@user_ch98d0b5c have you found anything that helps with the pain?
I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?
I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?
Chris Trout, Volunteer Mentor | @artscaping | Jul 7, 2020
Greetings @nycgirl. Welcome to Connect. If you got here through the home page, the directions for how to get started on Connect are on the right-hand side. So...you will see the headline "Welcome to Mayo Clinic Connect. On the right are three choices, you want the second one entitled "How to Get Started on Connect. I will see if I can get you a quick pic.
Anxious to read your story. We at connect are interested in every member's story. We are not clinicians. Nor are we medically trained. However, we get along quite well and our goal is always to help our members have a quality life.
May you have happiness and the causes of happiness.
Chris
Hello @nycgirl, I would like to add my welcome to Connect along with Chris @artscaping and other members. You can also access the Get Started on Connect guide using a link at the bottom of every Connect page in the left column of the footer. Here is the direct link to the guide - https://connect.mayoclinic.org/get-started-on-connect/
If you click the VIEW & REPLY button at the bottom of the email notification for this message, it will take you back to this discussion where you made the first post.
Are you looking to find some specific information?
Although I am diabetic (II), my neuropathy does not seem to be connected to the Glucose levels. Rather, my pancreas is enlarged (pancreomegaly) and leatherized, so I do not produce the necessary insulin. The cause seems to be my Gelsolin (AGel or GSN) Amyloidosis AL, including my RyR2 and FKTN mutations. I can pretty well keep my glucose within the target level except for a few minutes per day, using Novolin and my Abbott LibraView sensors and reader. But when the neuropathy hits in my hands, feet, crotch and face, a quarter-teaspoon of kitchen turmeric in a small glass of warm water usually handles it for a few hours.
Hi @oldkarl sorry to hear of your troubles with diabetes. It is a difficult illness to deal with affecting so many aspects of your health. I am assuming your body does not produce any insulin at all since you are injecting Novolin. Good job on keeping your sugar levels low. I know that is not an easy task. Do you also exercise and watch your diet for control? My mother has diabetes which she controls through diet and exercise. Unlike you, she needs no oral medications or injectables. Her diabetes has a different cause. Although her blood sugars are well managed to almost normal, her neuropathy had developed long before she was diagnosed with diabetes. Diabetes was not the cause of her neuropathy. Did you have neuropathy prior to your diabetes? When blood sugars are not well controlled, it is possible for the blood to have a more difficult time circulating, especially to the tiny blood vessels. Glad you found turmeric to help with your neuropathy pain. For some, getting enough sleep is exacerbated with neuropathy.
I want to thank all of you for your input/advise, I am going to make an appointment, I hope they will confirm because I went to Neuropathy clinic before and even had an EMG done.
Hello , to @arcticmark, the only tests I know of is skin punch biopsy. Fr some reason no neurologist wants to do it. I’m calling my insurance co. To final ANYONE who I can see( maybe 3 hours north).
Best of luck n prayers to you. My PN is horrible n plays of my spine stenosis 🙁.
I hope u have someone who gives you joy because it helps so much.
Hello @piross1528, Was your question has the medication helped you for @bruce2666? Members do not know who your question is for unless you click the REPLY button under their post or tag them with their @membername.
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Although I am diabetic (II), my neuropathy does not seem to be connected to the Glucose levels. Rather, my pancreas is enlarged (pancreomegaly) and leatherized, so I do not produce the necessary insulin. The cause seems to be my Gelsolin (AGel or GSN) Amyloidosis AL, including my RyR2 and FKTN mutations. I can pretty well keep my glucose within the target level except for a few minutes per day, using Novolin and my Abbott LibraView sensors and reader. But when the neuropathy hits in my hands, feet, crotch and face, a quarter-teaspoon of kitchen turmeric in a small glass of warm water usually handles it for a few hours.
Hi, I am new here and I cannot figure out how to post. Can you give me some advice? Thank you!
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1 ReactionGreetings @nycgirl. Welcome to Connect. If you got here through the home page, the directions for how to get started on Connect are on the right-hand side. So...you will see the headline "Welcome to Mayo Clinic Connect. On the right are three choices, you want the second one entitled "How to Get Started on Connect. I will see if I can get you a quick pic.
Anxious to read your story. We at connect are interested in every member's story. We are not clinicians. Nor are we medically trained. However, we get along quite well and our goal is always to help our members have a quality life.
May you have happiness and the causes of happiness.
Chris
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3 ReactionsHello @nycgirl, I would like to add my welcome to Connect along with Chris @artscaping and other members. You can also access the Get Started on Connect guide using a link at the bottom of every Connect page in the left column of the footer. Here is the direct link to the guide - https://connect.mayoclinic.org/get-started-on-connect/
If you click the VIEW & REPLY button at the bottom of the email notification for this message, it will take you back to this discussion where you made the first post.
Are you looking to find some specific information?
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1 ReactionHi @oldkarl sorry to hear of your troubles with diabetes. It is a difficult illness to deal with affecting so many aspects of your health. I am assuming your body does not produce any insulin at all since you are injecting Novolin. Good job on keeping your sugar levels low. I know that is not an easy task. Do you also exercise and watch your diet for control? My mother has diabetes which she controls through diet and exercise. Unlike you, she needs no oral medications or injectables. Her diabetes has a different cause. Although her blood sugars are well managed to almost normal, her neuropathy had developed long before she was diagnosed with diabetes. Diabetes was not the cause of her neuropathy. Did you have neuropathy prior to your diabetes? When blood sugars are not well controlled, it is possible for the blood to have a more difficult time circulating, especially to the tiny blood vessels. Glad you found turmeric to help with your neuropathy pain. For some, getting enough sleep is exacerbated with neuropathy.
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1 ReactionI want to thank all of you for your input/advise, I am going to make an appointment, I hope they will confirm because I went to Neuropathy clinic before and even had an EMG done.
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Helpful -
Hug
3 ReactionsHello , to @arcticmark, the only tests I know of is skin punch biopsy. Fr some reason no neurologist wants to do it. I’m calling my insurance co. To final ANYONE who I can see( maybe 3 hours north).
Best of luck n prayers to you. My PN is horrible n plays of my spine stenosis 🙁.
I hope u have someone who gives you joy because it helps so much.
-
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Helpful -
Hug
2 ReactionsBruce has the medication helped you?
Hello @piross1528, Was your question has the medication helped you for @bruce2666? Members do not know who your question is for unless you click the REPLY button under their post or tag them with their @membername.
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1 ReactionYeah that was my question. It was for Bruce2666. I was just wondering if any medications have helped him cope.
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1 Reaction