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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Oct 26, 2021
In reply to @sam31 "Hi John, I read the 2016 article and saw myself in that prediabetes scenario. I wonder..." + (show)
@sam31

Hi John, I read the 2016 article and saw myself in that prediabetes scenario. I wonder if there has been any followup to that research? Certainly, it would have gotten a lot of attention by now if it had any merit?

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Hi Sam @sam31, I see myself in the same prediabetes scenario also was recently reading more about the metabolic syndrome. I normally have my checkup in the spring and the doctor orders a lipids panel and fasting glucose but I think what's missing is the fasting insulin test to check the insulin resistance which could be the reason for higher A1C and the prediabetes label. I'm planning to have the fasting insulin test along with the fasting glucose test so that they can be compared and it will give a better picture of what's going on. I don't totally understand everything so I'm just trying to learn more about it. The good news is if you can catch it before you get to stage 2 diabetes I think you can fix it with diet and exercise. There is a discussion with some good info for nutrition and healthy eating -- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

-- Insulin Resistance & Prediabetes: https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/prediabetes-insulin-resistance
-- Neuropathies Associated With Diabetes and the Metabolic Syndrome: https://neuropathycommons.org/neuropathy/causes-neuropathy/neuropathies-associated-diabetes-and-metabolic-syndrome

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 26, 2021
In reply to @alexandraeugenia "No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the..." + (show)
@alexandraeugenia

No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the lightheadedness, and found treatment for the same? My spouse suffers from this. He has been to a primary care doctor, neurologist, cardiologist, physical therapist, ENT doctor, and podiatrist with no explanations. They ruled out inner ear problems and vertigo. He does not have diabetes, and his blood pressure is stable. The physical therapist suggested that the lightheadedness could be due to imbalance caused by neuropathy. However, he has experienced lightheadedness when sitting in his recliner. He was waking up with cramps but taking calcium and magnesium and an extra magnesium tablet before bedtime, alleviates the cramps. He exercises at the YMCA and walks at the Mall, using a cane for balance. This condition has caused anxiety and depression. He has stopped driving on the freeway because he doesn't want to put anyone at risk.

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Hello @alexandraeugenia, Welcome to Connect. I know it must be frustrating for your husband and you not being able to get a diagnosis and treatment after seeing so many different doctors and specialists. I'm wondering if this post by @jenniferhunter in this Lightheadedness discussion may be similar to what is going on with your husband - https://connect.mayoclinic.org/comment/244223/.

I know your husband has seen a lot of different doctors but have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic that uses a multidisciplinary teamwork approach to diagnosis difficult conditions? If you would like get a second opinion from Mayo Clinic, you can find the contact information for
the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

REPLY
alexandraeugenia | @alexandraeugenia | Oct 26, 2021

I suggested a teaching hospital to my husband, and he was not open to it because he has seen so many doctors. I am referring your response to him with hopes he will give it some consideration. Thank you for responding quickly.

REPLY
2 replies
alexandraeugenia | @alexandraeugenia | Oct 26, 2021
In reply to @alexandraeugenia "I suggested a teaching hospital to my husband, and he was not open to it because..." + (show)
@alexandraeugenia

I suggested a teaching hospital to my husband, and he was not open to it because he has seen so many doctors. I am referring your response to him with hopes he will give it some consideration. Thank you for responding quickly.

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I did not mention in my original post is that my husband had a CT scan of his brain and an MRI of his spine. Neither showed any irregularities. His upper back has been slightly curved (hunched) since youth.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 26, 2021
In reply to @alexandraeugenia "I suggested a teaching hospital to my husband, and he was not open to it because..." + (show)
@alexandraeugenia

I suggested a teaching hospital to my husband, and he was not open to it because he has seen so many doctors. I am referring your response to him with hopes he will give it some consideration. Thank you for responding quickly.

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@alexandraeugenia - You might want to show him what multidisciplinary teamwork is and how it can help with better outcomes for the patient. Here's more information here - https://www.td.org/insights/multidisciplinary-teamwork-ensures-better-healthcare-outcomes

REPLY
kenc | @kenc | Oct 27, 2021
In reply to @alexandraeugenia "No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the..." + (show)
@alexandraeugenia

No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the lightheadedness, and found treatment for the same? My spouse suffers from this. He has been to a primary care doctor, neurologist, cardiologist, physical therapist, ENT doctor, and podiatrist with no explanations. They ruled out inner ear problems and vertigo. He does not have diabetes, and his blood pressure is stable. The physical therapist suggested that the lightheadedness could be due to imbalance caused by neuropathy. However, he has experienced lightheadedness when sitting in his recliner. He was waking up with cramps but taking calcium and magnesium and an extra magnesium tablet before bedtime, alleviates the cramps. He exercises at the YMCA and walks at the Mall, using a cane for balance. This condition has caused anxiety and depression. He has stopped driving on the freeway because he doesn't want to put anyone at risk.

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Vertigo seems to be a common plight among former military.

REPLY
1 reply
alexandraeugenia | @alexandraeugenia | Oct 27, 2021
In reply to @kenc "Vertigo seems to be a common plight among former military." + (show)
@kenc

Vertigo seems to be a common plight among former military.

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Thank you for your comment. My husband was tested for vertigo, and the results were negative.

REPLY
1 reply
sam31 | @sam31 | Oct 27, 2021
In reply to @alexandraeugenia "No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the..." + (show)
@alexandraeugenia

No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the lightheadedness, and found treatment for the same? My spouse suffers from this. He has been to a primary care doctor, neurologist, cardiologist, physical therapist, ENT doctor, and podiatrist with no explanations. They ruled out inner ear problems and vertigo. He does not have diabetes, and his blood pressure is stable. The physical therapist suggested that the lightheadedness could be due to imbalance caused by neuropathy. However, he has experienced lightheadedness when sitting in his recliner. He was waking up with cramps but taking calcium and magnesium and an extra magnesium tablet before bedtime, alleviates the cramps. He exercises at the YMCA and walks at the Mall, using a cane for balance. This condition has caused anxiety and depression. He has stopped driving on the freeway because he doesn't want to put anyone at risk.

Jump to this post

Hi Alex,

Thanks for sharing your story. I have similar conditions. No pain but numbness and lightheadedness. Wish I could tell you where we go from here. Can anyone share?

Bless all,

Rick

REPLY
kenc | @kenc | Oct 27, 2021
In reply to @alexandraeugenia "Thank you for your comment. My husband was tested for vertigo, and the results were negative." + (show)
@alexandraeugenia

Thank you for your comment. My husband was tested for vertigo, and the results were negative.

Jump to this post

Good to see that.

REPLY
betoma | @betoma | Nov 4, 2021
In reply to @larrymc "Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that..." + (show)
@larrymc

Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that it is extremely rare. He is talking about getting approval for starting IVIg treatments. Has anyone had experience with this type of neuropathy and or the treatment?

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larrymc - I just joined this group, and yours was the first post I saw. I was diagnosed with anti-MAG several years ago. Beginning this July, I started a IVIg treatments. I had about 10–12 infusions, and met with my neurologist on Monday for testing to determine if there has been any improvement or change. The conclusion is - no, there has been no improvement, and therefore, I've discontinued this treatment. I would add that there were no side effects, so the procedure was quite benign for me. I'm glad I tried it, now I know that it's not an option. Next on the list of possible treatments is plasma exchange, or plasmapheresis. I'm still exploring this option, and will be investigating whether my insurance company will cover the cost. All of these choices, including immuno suppressant options, need to be continued for years and years, if they prove helpful. At least that's my understanding.

Does anyone have any experience with plasmapheresis? It's a bit more invasive than IVIg, as a catheter is required. Any comments on this topic? Thanks.

REPLY
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