@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.
Hello @bwin11, Welcome to Connect. You will notice that we removed your email address to protect your privacy as Connect is a public forum and can be seen by anyone. You can easily exchange information with other members by using the private message function of Connect - How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
I'm assuming your reply to @artscaping was asking if she could let you know what has worked or not for her. Chris @artscaping shared her neuropathy story in the Member Neuropathy Journey Stories: What's Yours? discussion here: https://connect.mayoclinic.org/comment/310344/. You can also ready what other members have shared helped them by going to the top of the discussion and reading through their stories.
@bwin11 are you able to share a little more about your neuropathy diagnosis and symptoms?
Good morning @bwin11, I did not see your request because you commented on another post and without any reference to yourself. That's O.K because @johnbishop has dealt with neuropathy a lot longer than I have.
In order to have a better chance of hitting the nail on the head, would you be able to share with me your diagnosis and the medications, and alternative treatments (if any) that you have used with success? It is also important to know what attempts you have made that resulted in improvement in your quality of life.
What was the most important and effective recommendation?
I was diagnosed as prediabetic several years ago. I lost 100 pounds (that's a whole other story) and am now non-diabetic but several of my doctors treat me as if I were actually diabetic. And one of them, a neurologist, diagnosed me with diabetic neuromas. My neuropathy was actually caused by Morton's neuromas in both feet, as well as the experimental procedure to relieve the neuroma areas of pressure, and surgeries to remove the neuromas. So, in my mind, I do not have diabetic neuropathy.
I was diagnosed as prediabetic several years ago. I lost 100 pounds (that's a whole other story) and am now non-diabetic but several of my doctors treat me as if I were actually diabetic. And one of them, a neurologist, diagnosed me with diabetic neuromas. My neuropathy was actually caused by Morton's neuromas in both feet, as well as the experimental procedure to relieve the neuroma areas of pressure, and surgeries to remove the neuromas. So, in my mind, I do not have diabetic neuropathy.
Hello @annievee, Welcome to Connect. That is great that you have been able to lose that much weight. I've always been told I was prediabetic also and my weight was as high as 330 lbs and out of control for a long time. I was able to get down to 250 to 260 but stayed there until a little over a year ago when I started intermittent fasting which helped me get to my present weight of 215. I'm sure your primary care doctor is pleased that you have lost a lot of weight. Diabetes does run in my family but I was always irked about the prediabetes label myself.
My diagnosis is CIDP. The cause is an "autoimmune situation" possibly exacerbated by sensitivity to gluten. I am on a gluten-free diet and am receiving Ivig infusions. The diagnosis resulted from NCS. The cause was determined from extensive blood tests. My treatment has just commenced and it is too early to offer feedback.
Hello @annievee, Welcome to Connect. That is great that you have been able to lose that much weight. I've always been told I was prediabetic also and my weight was as high as 330 lbs and out of control for a long time. I was able to get down to 250 to 260 but stayed there until a little over a year ago when I started intermittent fasting which helped me get to my present weight of 215. I'm sure your primary care doctor is pleased that you have lost a lot of weight. Diabetes does run in my family but I was always irked about the prediabetes label myself.
Hi John, congratulations on your wonderful weight loss! I still have a ways to go in my mind but, yes, my PCP and a bunch of others are very happy with mine.
Thanks for the links.
Yes, I have been diagnosed with peripheral neuropathy. I've used duloxetine/Cymbalta for many years but have started to have some trouble and am going off of it. I also have Restless Leg Syndrome and the duloxetine is interfering with the Pramipexole I'm taking for that. I have now started to taper off of the duloxetine with my psychiatrist's help. I also used a bit of a substance to fill the pain gap of the duloxetine.
In 2013 I was diagnosed at Mayo with non diabetic peripheral neuropathy and essential tremor. Symptoms of the tremor are illegible handwriting and problems gripping sometimes. As time has progressed I have injured my feet due to no sensation at all below both knees. Some 3 years ago on a cruise a toe blister turned into sepsis and the left foot has been a constant struggle to keep from infection - even though I do not have neuropathy. A doctor recently suggested B12 (as Methylcobalamin) and I have just started taking it so I cannot judge effectiveness. At age 64 I am hopeful I will be able to resume more activities (love woodworking) and get outside much more. I welcome any suggestions!
In 2013 I was diagnosed at Mayo with non diabetic peripheral neuropathy and essential tremor. Symptoms of the tremor are illegible handwriting and problems gripping sometimes. As time has progressed I have injured my feet due to no sensation at all below both knees. Some 3 years ago on a cruise a toe blister turned into sepsis and the left foot has been a constant struggle to keep from infection - even though I do not have neuropathy. A doctor recently suggested B12 (as Methylcobalamin) and I have just started taking it so I cannot judge effectiveness. At age 64 I am hopeful I will be able to resume more activities (love woodworking) and get outside much more. I welcome any suggestions!
In 2013 I was diagnosed at Mayo with non diabetic peripheral neuropathy and essential tremor. Symptoms of the tremor are illegible handwriting and problems gripping sometimes. As time has progressed I have injured my feet due to no sensation at all below both knees. Some 3 years ago on a cruise a toe blister turned into sepsis and the left foot has been a constant struggle to keep from infection - even though I do not have neuropathy. A doctor recently suggested B12 (as Methylcobalamin) and I have just started taking it so I cannot judge effectiveness. At age 64 I am hopeful I will be able to resume more activities (love woodworking) and get outside much more. I welcome any suggestions!
Hello @jetelling, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I don't have essential tremors but I do have idiopathic small fiber peripheral neuropathy. I think just doing what you are now, searching for answers is a plus. One of the best things we can do is learn as much as we can about our health condition and what options are available to help - both medical and natural.
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Please let me know what has worked or not worked for you.
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1 ReactionHello @bwin11, Welcome to Connect. You will notice that we removed your email address to protect your privacy as Connect is a public forum and can be seen by anyone. You can easily exchange information with other members by using the private message function of Connect - How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
I'm assuming your reply to @artscaping was asking if she could let you know what has worked or not for her. Chris @artscaping shared her neuropathy story in the Member Neuropathy Journey Stories: What's Yours? discussion here:
https://connect.mayoclinic.org/comment/310344/. You can also ready what other members have shared helped them by going to the top of the discussion and reading through their stories.
@bwin11 are you able to share a little more about your neuropathy diagnosis and symptoms?
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Helpful -
Hug
2 ReactionsGood morning @bwin11, I did not see your request because you commented on another post and without any reference to yourself. That's O.K because @johnbishop has dealt with neuropathy a lot longer than I have.
In order to have a better chance of hitting the nail on the head, would you be able to share with me your diagnosis and the medications, and alternative treatments (if any) that you have used with success? It is also important to know what attempts you have made that resulted in improvement in your quality of life.
What was the most important and effective recommendation?
May you find contentment and ease.
Chris
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1 ReactionI was diagnosed as prediabetic several years ago. I lost 100 pounds (that's a whole other story) and am now non-diabetic but several of my doctors treat me as if I were actually diabetic. And one of them, a neurologist, diagnosed me with diabetic neuromas. My neuropathy was actually caused by Morton's neuromas in both feet, as well as the experimental procedure to relieve the neuroma areas of pressure, and surgeries to remove the neuromas. So, in my mind, I do not have diabetic neuropathy.
Hello @annievee, Welcome to Connect. That is great that you have been able to lose that much weight. I've always been told I was prediabetic also and my weight was as high as 330 lbs and out of control for a long time. I was able to get down to 250 to 260 but stayed there until a little over a year ago when I started intermittent fasting which helped me get to my present weight of 215. I'm sure your primary care doctor is pleased that you have lost a lot of weight. Diabetes does run in my family but I was always irked about the prediabetes label myself.
There is an older discussion you may want to read through for Morton's Neuroma - https://connect.mayoclinic.org/discussion/mortons-neuroma-209f16/. Also, you might find the following information helpful -- Morton's neuroma - Diagnosis and treatment: https://www.mayoclinic.org/diseases-conditions/mortons-neuroma/diagnosis-treatment/drc-20351939
Have you been diagnosed with peripheral neuropathy or on any type of treatments for neuropathy?
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2 ReactionsMy diagnosis is CIDP. The cause is an "autoimmune situation" possibly exacerbated by sensitivity to gluten. I am on a gluten-free diet and am receiving Ivig infusions. The diagnosis resulted from NCS. The cause was determined from extensive blood tests. My treatment has just commenced and it is too early to offer feedback.
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Like -
Helpful -
Hug
1 ReactionHi John, congratulations on your wonderful weight loss! I still have a ways to go in my mind but, yes, my PCP and a bunch of others are very happy with mine.
Thanks for the links.
Yes, I have been diagnosed with peripheral neuropathy. I've used duloxetine/Cymbalta for many years but have started to have some trouble and am going off of it. I also have Restless Leg Syndrome and the duloxetine is interfering with the Pramipexole I'm taking for that. I have now started to taper off of the duloxetine with my psychiatrist's help. I also used a bit of a substance to fill the pain gap of the duloxetine.
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Like -
Helpful -
Hug
1 ReactionIn 2013 I was diagnosed at Mayo with non diabetic peripheral neuropathy and essential tremor. Symptoms of the tremor are illegible handwriting and problems gripping sometimes. As time has progressed I have injured my feet due to no sensation at all below both knees. Some 3 years ago on a cruise a toe blister turned into sepsis and the left foot has been a constant struggle to keep from infection - even though I do not have neuropathy. A doctor recently suggested B12 (as Methylcobalamin) and I have just started taking it so I cannot judge effectiveness. At age 64 I am hopeful I will be able to resume more activities (love woodworking) and get outside much more. I welcome any suggestions!
(Even though I do not have diabetes)
Hello @jetelling, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I don't have essential tremors but I do have idiopathic small fiber peripheral neuropathy. I think just doing what you are now, searching for answers is a plus. One of the best things we can do is learn as much as we can about our health condition and what options are available to help - both medical and natural.
You may be interested in several other discussions to learn what other members have shared.
-- Essential tremors: any ideas on coping and managing tremors?: https://connect.mayoclinic.org/discussion/essential-tremors-1/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Also, learning as much as you can about other treatments for neuropathy may be helpful. These are the 2 main sites I use for learning more and the latest research.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Which of your symptoms causes you the most concern or pain?
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