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.

@geegie

Hi Everyone,
I'm new to the group and have found your shared information very, very valuable.
I've Short Fiber Neuropathy and if you could please help me by telling me if you went to Mayo Clinic in Arizona. Did you received care to solve your particular situation or if you did not? Thanks so much and I'll look forward to your responses. Rose

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Hi, @geegie - along with @johnbishop, I'd like to welcome you to Mayo Clinic Connect. I'm glad you've found information members have shared here very valuable.

Per johnbishop's request, I've merged your post with this one so that you can meet many others who also have talked about neuropathy and may have some insights on receiving neuropathy care at Mayo Clinic in Arizona and whether it solved their situations, and perhaps share some of their stories with neuropathy, as well. Please meet @cehunt57 @annac123 @thankful @gailfaith @swiss @ujeeniack @sunnytxgirl @jenniferhunter and many others.

What are the main symptoms you are experiencing, @geegie?

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@lisalucier

Hi, @geegie - along with @johnbishop, I'd like to welcome you to Mayo Clinic Connect. I'm glad you've found information members have shared here very valuable.

Per johnbishop's request, I've merged your post with this one so that you can meet many others who also have talked about neuropathy and may have some insights on receiving neuropathy care at Mayo Clinic in Arizona and whether it solved their situations, and perhaps share some of their stories with neuropathy, as well. Please meet @cehunt57 @annac123 @thankful @gailfaith @swiss @ujeeniack @sunnytxgirl @jenniferhunter and many others.

What are the main symptoms you are experiencing, @geegie?

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Fortunately or not, I've got numbness in my feet and legs in various degrees. The numbness is spreading upward and currently I'm taking Azathiopine and will also be taking Paquenil. Because I'm very seriously thinking of going to Mayo Arizona, I'd really like to know if anyone has gone and if it helped their short fiber neuropathy. Thanks for whatever you can to help me and thanks to those for the previously submitted information.
Rose

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@sunnytxgirl

I'm s 62 year old female and was recently diagnosed with a spinal cyst which they say is causing neuropathy in my legs. However, I'm not convinced that the cyst is causing it. Night time is the worst for me. The burning sensation in one of my feet is sometimes unbearable. I have been subscribed Amtripiline. Does anyone have experience with this? Id rather not take Gabertin.

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Am I in the wrong group. No one seems to be acknowledging my question.

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@sunnytxgirl

Am I in the wrong group. No one seems to be acknowledging my question.

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Hi @sunnytxgirl, welcome to Connect. Thank you for your post. Sometimes a post will slip through the cracks so thanks for second shout out. I have no medical training or background but I'm guessing a spinal cyst could cause pressure on a nerve which could cause neuropathy.

Here are a couple of links that may offer some more information:

Tarlov Cysts Masquerading as Peripheral Neuropathy
-- https://jamanetwork.com/journals/jamaneurology/article-abstract/792872

Rare Clinical Presentations of Perineural Cysts Besides Radicular Pain
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3468810/

Did you ask your doctors why they thought the spinal cyst was causing your neuropathy?

John

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@johnbishop

Hi @sunnytxgirl, welcome to Connect. Thank you for your post. Sometimes a post will slip through the cracks so thanks for second shout out. I have no medical training or background but I'm guessing a spinal cyst could cause pressure on a nerve which could cause neuropathy.

Here are a couple of links that may offer some more information:

Tarlov Cysts Masquerading as Peripheral Neuropathy
-- https://jamanetwork.com/journals/jamaneurology/article-abstract/792872

Rare Clinical Presentations of Perineural Cysts Besides Radicular Pain
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3468810/

Did you ask your doctors why they thought the spinal cyst was causing your neuropathy?

John

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Thank You for your response and the links.

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Sometimes even a nerve compression due to osteophorosis of bones may also occur. But this is suitable only for aged ones. When a nerve is trapped between bones that is nerve compression. Im not a Dr. As im having onsteoporosis Iam also having blcokage in left hand and leg. However blood thinner helped me. So kindly consult both Neuro & Ortho.

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I have IgA nephropathy! 7 years into disease. Prednisone 20 mg daily along with immigrant 125 mg. Daily. Three blood pressure meds! GFR still at 30, creatinine at 1.7. Does anyone else have bad neuropathy in feet from similar kidney disease?? Night time is the worst!

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@eileen14

I have IgA nephropathy! 7 years into disease. Prednisone 20 mg daily along with immigrant 125 mg. Daily. Three blood pressure meds! GFR still at 30, creatinine at 1.7. Does anyone else have bad neuropathy in feet from similar kidney disease?? Night time is the worst!

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Hello @eileen14, welcome to Connect. I'm glad you found us. I'm tagging our Director Colleen @colleenyoung to see if she is able to move your post to the following discussion where you can meet others with IGA Nephropathy and have more visibility.

Groups > Kidney & Bladder > IGA Nephropathy
-- https://connect.mayoclinic.org/discussion/iga-nephropathy-2556ef/

I would also like to share the following article with you:

My Second Chance – Savannah Mullis
-- https://connect.mayoclinic.org/2016/10/12/my-second-chance-savannah-mullis/

@eilleen14 do you have pain and numbness in your feet? Has anything you've tried helped?

John

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I have never been told what kind of nephropathy I have but it is terrible in my left foot and toes. There is some numbness in both feet. I take Lyrica and Tramadol twice a day. Yes, the nights are bad but the days are no walk in the park either. Some days are debilitating.

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@tucsonguy

I have never been told what kind of nephropathy I have but it is terrible in my left foot and toes. There is some numbness in both feet. I take Lyrica and Tramadol twice a day. Yes, the nights are bad but the days are no walk in the park either. Some days are debilitating.

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I have the exact same issue. I'm on Amtripline which helps at night. I have been prescribed Gabapentin but hate to take it.

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