Living with Neuropathy - Welcome to the group

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.

@johnbishop

@maggie1960 I never get tired of hearing this type of story, especially from a youngster like yourself. At 79 I still look forward to learning more about my health and "partnering" with my doctor on decisions that impact my health. Of course I have lots to learn and I do have to remember who the doctor is 🙃and it's not Dr. Google. It helps me ask better questions which hopefully become better outcomes for my healthcare. If you like Dr. Montori, I think you will also like Dr. Amit Sood, Another Mayo Clinic doctor I had the opportunity to listen to at meeting a few years back. Loved his "A Very Happy Brain" video" -- https://youtu.be/GZZ0zpUQhBQ. He also gave a great TED Talk that you might find interesting -- Happy Brain: How to Overcome Our Neural Predispositions to Suffering: https://youtu.be/KZIGekgoaz4

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@johnbishop I watched Dr. Sood's Happy Brain video and found it entertaining and informative. Love his sense of humor and how he goes about getting us to think and focus. The focus thing is something I really have problems with!
Thanks for another good recommendation

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I am 65 years old. I am not sure how long any kind of peripheral neuropathy may have started on me as I have been on Gabapentin and Tegretol for seven years for Trigeminal Neuroglia. I think that it has masked what is now noticeable. Last fall I noticed my feet tingling with some stabs in my ankles. Over the last 10 months or so the progression has gone up my legs and down my arms. There has been a few scary moments lately of waking in the morning to find the tingling in the middle of my chest, down my arms into my hands and even my jaw in front. It had me worried about my heart but my pulse and pulse oxygen was fine and no pain. Just the annoying prickly tingle as everything had been asleep. I want to go to a neurologist and am trying to. My initial symptoms at the time was just in my feet and ankles and I was denied to get into the office. I am afraid that if I say how things have progressed that it will be viewed as me making things up just to get an appointment. Any thoughts on what I should do?

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@artsyseven

I am 65 years old. I am not sure how long any kind of peripheral neuropathy may have started on me as I have been on Gabapentin and Tegretol for seven years for Trigeminal Neuroglia. I think that it has masked what is now noticeable. Last fall I noticed my feet tingling with some stabs in my ankles. Over the last 10 months or so the progression has gone up my legs and down my arms. There has been a few scary moments lately of waking in the morning to find the tingling in the middle of my chest, down my arms into my hands and even my jaw in front. It had me worried about my heart but my pulse and pulse oxygen was fine and no pain. Just the annoying prickly tingle as everything had been asleep. I want to go to a neurologist and am trying to. My initial symptoms at the time was just in my feet and ankles and I was denied to get into the office. I am afraid that if I say how things have progressed that it will be viewed as me making things up just to get an appointment. Any thoughts on what I should do?

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Hi @artsyseven, Welcome to Connect. Symptoms can be a little scary sometimes. You mentioned you have been dealing with Trigeminal Neuralgia for seven years and now the condition has progressed. There is another discussion that you may want to join and read what others with TN have shared.

-- Trigeminal neuralgia: What helps stop the pain?:
https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
Are you able to seek help at a teaching hospital or major health facility like Mayo Clinic?

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@johnbishop

Hi @artsyseven, Welcome to Connect. Symptoms can be a little scary sometimes. You mentioned you have been dealing with Trigeminal Neuralgia for seven years and now the condition has progressed. There is another discussion that you may want to join and read what others with TN have shared.

-- Trigeminal neuralgia: What helps stop the pain?:
https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
Are you able to seek help at a teaching hospital or major health facility like Mayo Clinic?

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Thank you for your reply. I apparently did not describe things very well. My Trigeminal Neurolgia is not worse. The neuropathy in my feet since last fall has progressed to being in my legs and arms, and has actually happened in my chest and jaw upon waking in the morning

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@artsyseven

Thank you for your reply. I apparently did not describe things very well. My Trigeminal Neurolgia is not worse. The neuropathy in my feet since last fall has progressed to being in my legs and arms, and has actually happened in my chest and jaw upon waking in the morning

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Sorry, I thought the Trigeminal Neuralgia may have progressed and was causing the new symptoms but I think I misunderstood part of your description. There are several types of Neuralgia and what you describe sounds similar to Peripheral neuralgia which is similar to peripheral neuropathy -- What to know about neuralgia: https://www.medicalnewstoday.com/articles/325331

You mentioned being denied an appointment with a neurologist and now you are worried about telling how your symptoms have progressed. One thing that might help is to plan the conversation for an appointment with your doctor and possibly take someone with you to the appointment that can support and help you remember the questions you want to ask. One site that has some really good information that will help you with this is The Patient Revolution -- https://patientrevolution.org/visit-tools

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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@artsyseven
ALWAYS be totally open and honest with your doctors.
If they choose not to believe you there's not much you can do about that. If that's the case you wouldn't want them as a provider anyway. But don't assume you know what they may think.

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@artsyseven

I am 65 years old. I am not sure how long any kind of peripheral neuropathy may have started on me as I have been on Gabapentin and Tegretol for seven years for Trigeminal Neuroglia. I think that it has masked what is now noticeable. Last fall I noticed my feet tingling with some stabs in my ankles. Over the last 10 months or so the progression has gone up my legs and down my arms. There has been a few scary moments lately of waking in the morning to find the tingling in the middle of my chest, down my arms into my hands and even my jaw in front. It had me worried about my heart but my pulse and pulse oxygen was fine and no pain. Just the annoying prickly tingle as everything had been asleep. I want to go to a neurologist and am trying to. My initial symptoms at the time was just in my feet and ankles and I was denied to get into the office. I am afraid that if I say how things have progressed that it will be viewed as me making things up just to get an appointment. Any thoughts on what I should do?

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artsyseven -- You commented that you were denied to get into the office, I assume you are referring to your doctor's office. At the end of your comment, you asked for any thoughts on what to do. I have one. How about seeking out a new doctor. I have always considered my various doctors to be a partner in my health care. It has worked out well for me. Wish you the best. Ed

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Has anyone had success with tracing numbness and aching with severe stenosis of L4 and L5.
The Perineal nerve traces the leg and foot issues that I have. Hope that surgery on the back will
remove any restriction to the nerve in question. This is my diagnosis as doctors just throw up their
hands. Only patients know how and where the numbness and pain are located.

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@karleenhubley

Has anyone had success with tracing numbness and aching with severe stenosis of L4 and L5.
The Perineal nerve traces the leg and foot issues that I have. Hope that surgery on the back will
remove any restriction to the nerve in question. This is my diagnosis as doctors just throw up their
hands. Only patients know how and where the numbness and pain are located.

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Welcome @karleenhubley, I have numbness in the feet and legs but don't have any pain with my small fiber peripheral neuropathy. I also have had lower back issues since my mid 50s along with degenerative disk disease. I haven't even thought about back surgery but I'm guessing part of my numbness may be attributed to spinal compression on the nerves.

@jenniferhunter may have some thoughts or experience she can share with you on L5 and L5 surgery fixing nerve compression and relieving your symptoms.

When is your surgery?

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@johnbishop

Welcome @karleenhubley, I have numbness in the feet and legs but don't have any pain with my small fiber peripheral neuropathy. I also have had lower back issues since my mid 50s along with degenerative disk disease. I haven't even thought about back surgery but I'm guessing part of my numbness may be attributed to spinal compression on the nerves.

@jenniferhunter may have some thoughts or experience she can share with you on L5 and L5 surgery fixing nerve compression and relieving your symptoms.

When is your surgery?

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I am getting my second , a current MRI, Sept. 15. Then I will speak to a neurosurgeon that my doc. recommends. I will interview him and get another opinion. We must be self advocates.

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