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?

@dancermurphy

My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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@dancemurphy
Hi Mary!
Welcome to our group! I am in no way in the medical field, so take my advice from where it comes.
First off, don't jump to any conclusions. I assume when you say you had neck surgery, you mean surgery on your cervical spine????

I had cervical surgery one year ago. I admit I did not have any of the symptoms you are explaining. That being said, sometimes after surgery there can be some swelling from the procedure. This can cause the nerves to be irritated and result in temporary neuropathy. As far as balance and memory loss, have you read the insert that came with the Neurotin? Can it be one of the side effects?

In any case, I strongly urge you to call your surgeon and if a phone conference will not work, then insist on an appointment. If you are not happy with the answers, make an appointment with your PCP or neurologist. In the meanwhile, baby yourself as far as your neck is concerned. Do not bend or stretch, do not twist or make sudden movements with your head. Let your surgery heal. The outside can look fine, but it takes months for the internal healing to be 100% healed.

So, take a deep breath and do not panic.

Ronnie (GRANDMAr)

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@dancermurphy

My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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@dancermurphy They symptoms you describe are definitely side affects from the Neurontin. Did you give the higher dose that helps you time to "sink in"? I've found that you need to give some things a few months before some of the side affects go away. Your body needs some time to adjust & process the medication. I have taken Neurontin and now take Lyrica and the side affects are the same.

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@dancermurphy

My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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@dancermurphy I find nelurontin/gabapentin really scary stuff. It may help with pain–although I haven't found that–but the side effects are frightening.

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@qball2019 Good morning and thank you for the reminder that we need to give medications, treatments, and recommended lifestyle adjustments some time to “settle in”. Practicing mindfulness can help with the “getting to know you” process, e.g. practicing yoga regularly to reap the benefit, finding a creative hobby, giving our bodies time to absorb and adjust, and especially supporting our medical providers and caregivers as they search for answers that will help us have a better quality of life.

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@steeldove

@dancermurphy I find nelurontin/gabapentin really scary stuff. It may help with pain–although I haven't found that–but the side effects are frightening.

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I’m just beginning to suffer with constant burning
in my feet. Will be seeing my family practice doc on Friday and then I imagine a referral to a neurologist. Gabapenpin has already been suggested. Can you share what side effects you have experienced?
Thank you so much!
Victoria

Liked by grandmaR

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Hello again. I forgot to mention that I tried to be seen at Mayo in Rochester, but they would not give me an appointment.

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@dancermurphy

My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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@dancermurphy Goid morning. It might help to tell you that I also experienced those symptoms after starting neurontin. My neurologist modified the time and dosage. The symptoms of grasping for words, feeling fuzzy, and unbalanced, stopped as my body adjusted to the medication and dosage time. Maybe time and an adjustment will help soothe your fears. Be safe and protected today. Chris

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@vilee

Hello again. I forgot to mention that I tried to be seen at Mayo in Rochester, but they would not give me an appointment.

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@vilee I got that run around with Mayo Rochester Neurology last year, and go the impression that the department is overwhelmed and reluctant to take on patients who they might not be able to help. I worked around by getting another of my Mayo Rochester docs to push for the appointment, which I then got. But I'm still disappointed. The current Mayo tv commercial says, "When it's time to find answers" but I don't feel that they're really working with me to find answers. My symptoms keep getting worse, taking over my whole body, and I want to know what I'm looking forward to so that I can plan how and where to live my life.

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@vilee, Good morning. I have not been accepted for treatment at Mayo. The team felt that I am already being treated appropriately and there is nothing more that can be done right now. @johnbishop has written about his experience and the results of his evaluation at Mayo. That might be helpful for you to know. John, can you explain. Be safe and have happiness today. Chris

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I suggest being more persistent in getting an appointment at Rochester. I know it is difficult and I was refused several times. Please consider not going directly to a neurologist but General admissions It was discovered that my issues are caused by nerve clumping not Idiopathic (through a good MRI), and can be treated. Not sure if these treatments will be successful or not but it is important to get a good diagnosis and find out exactly what you have. This gives you the opportunity to fight back and do what you can to improve your condition. Good luck and god bless.

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Good Afternoon,
It's not just Mayo in Rochester. I've tried numerous times to get an appointment at Mayo in Jacksonville, FL. I came close once when someone called me to make an appointment. When they asked for my history, she called the department she thought I needed and they said that at that time they were not taking on new patients. I needed neurology and had a script from my neurosurgeon.

Ronnie (GRANDMAr)

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@vilee

I’m just beginning to suffer with constant burning
in my feet. Will be seeing my family practice doc on Friday and then I imagine a referral to a neurologist. Gabapenpin has already been suggested. Can you share what side effects you have experienced?
Thank you so much!
Victoria

Jump to this post

@vilee
Hi Victoria,
Sorry you are having trouble with burning! I can only imagine how uncomfortable it is.
As far as Gabapentin, frankly, I've been taking it for a few years. I really don't think it has helped me in any way. So, once in a while I will go off or just lower the dose until one of the docs tell me to take the prescribed dosage.
I take more than one med that has fatigue as a possible side effect, so I don't know if it is coming from that.
I can tell you that my brother takes it, but only at night, because he says it tires him enough to sleep.
I know there are others with different stories.

Just remember, each and every one of us is different. We have different conditions. We take different meds. We tolerate things differently. Therefore, there is no way of knowing how YOU will react to the medicine. And, if the doctor thinks it might help and you are so uncomfortable, you may want to try it!

Good luck!
Ronnie (GRANDMAr)

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@grandmar

@dancemurphy
Hi Mary!
Welcome to our group! I am in no way in the medical field, so take my advice from where it comes.
First off, don't jump to any conclusions. I assume when you say you had neck surgery, you mean surgery on your cervical spine????

I had cervical surgery one year ago. I admit I did not have any of the symptoms you are explaining. That being said, sometimes after surgery there can be some swelling from the procedure. This can cause the nerves to be irritated and result in temporary neuropathy. As far as balance and memory loss, have you read the insert that came with the Neurotin? Can it be one of the side effects?

In any case, I strongly urge you to call your surgeon and if a phone conference will not work, then insist on an appointment. If you are not happy with the answers, make an appointment with your PCP or neurologist. In the meanwhile, baby yourself as far as your neck is concerned. Do not bend or stretch, do not twist or make sudden movements with your head. Let your surgery heal. The outside can look fine, but it takes months for the internal healing to be 100% healed.

So, take a deep breath and do not panic.

Ronnie (GRANDMAr)

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Thank you !! I am waiting on the results now from cervical and lower back MRI and they did a EMG so this wed I hope to know more . I know I did to much to soon as I felt great and was in zero pain . I am working long hours for 3 days straight then will be able to take a break for a couple weeks . Thanks for listening to me

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@artscaping

@vilee, Good morning. I have not been accepted for treatment at Mayo. The team felt that I am already being treated appropriately and there is nothing more that can be done right now. @johnbishop has written about his experience and the results of his evaluation at Mayo. That might be helpful for you to know. John, can you explain. Be safe and have happiness today. Chris

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Hi Victoria @vilee, welcome to Connect. Thanks for tagging me @artscaping. Victoria I had neuropathy for 20+ years before deciding to see if there was anything that would help. You can read my story in a post earlier on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I only have numbness with my idiopathic small fiber peripheral neuropathy so none of the pain drugs do anything for numbness for me. I take supplements that seem to have slowed down or stopped the progression of my PN but it's a little subjective on my part. I found the supplements in a closed Facebook group and most of the over 6000 members of the group have found relief from the pain and been able to taper off of all pain drugs by taking the supplements. The link to the group and their website is in my story/experience link above.

I was referred to the Mayo neurologist by my Mayo primary care doctor. Have you already been diagnosed with idiopathic PN?

John

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Hi I had a really bad night two nights ago because a really bad thunderstorm come through I all my symptoms for my head throbbing numbing spiking burning. Does anyone else have this problem during thunderstorm.

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