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

@pondoak @terryzrust @bethwiseman @windsorchris @efgh1020 @artscaping and others, The Foundation for Peripheral Neuropathy is having a Chair QiGong for PN Webinar if anyone is interested in giving it a try.

QiGong combines gentle flowing movement with breathing and meditation techniques that provide low-impact exercise, improved balance, and overall health benefits. Ms. Cynthia Maltenfort, who is a yoga, tai chi and QiGong instructor, will lead us in this ancient form of Chinese exercise. Learn how QiGong, modified for beginners, can help you.

Wednesday, June 16
2:30 - 3:30 p.m. Eastern Time
1:30 - 2:30 p.m. Central Time
12:30 - 1:30 p.m. Mountain Time
11:30 a.m. - 12:30 p.m. Pacific Time

Register for the Webinar: https://register.gotowebinar.com/register/678958740669516812

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So, will this help my PN?

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@bellabray

My name is Victoria & I was diagnosed approx. 8 moths. Ago with CRPS . After having a lumbar back fusion. I had two nerve blocks by a pain management Dr. 5 wks. After my surgery but had no relief of my pain. At first my legs and feet were mottled , red and purple with pain, burning and swelling. Now at 9 moths. Post surgery I am still dealing with pain & burning. I am on gabapenton & I occasionally have to take Vicodin (lowest dose) I believe that at this point the gabapenton is making it worse. My blood vessels in my feet and legs bulge out & I’m getting areas of vericose veins. I’m just wondering if other people feel gabapenton is making things worse. In the beginning my pain and burning was mostly in my feet and ankles. Now I have pain and swelling in my calves and legs. I’m retaining a lot of water in my legs. I would appreciate any input.

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Gabapentin is definitely not helping me withPN

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@bethwiseman

So, will this help my PN?

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It’s something to try if nothing else is giving you relief. It sounds like it has helped some people.

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Hello:
Please, would you tell me in Miami where are local pharmacies for buy Gabapentin?
Best regards,
Cynthia

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@silverapple

Hello:
Please, would you tell me in Miami where are local pharmacies for buy Gabapentin?
Best regards,
Cynthia

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Hello @silverapple I believe you need a prescription for Gabapentin. @johnbishop can you confirm?

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@amandajro

Hello @silverapple I believe you need a prescription for Gabapentin. @johnbishop can you confirm?

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Hello @silverapple, I think @amandajro is correct. You can't buy Gabapentin without a prescription although I'm not sure about some unscrupulous online pharmacies. I think it's a controlled substance in quite a few states and controlled state by state.

State-Imposed Restrictions on Gabapentin: https://www.medval.com/2020/01/08/state-imposed-restrictions-on-gabapentin/

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My husband has been dealing with severe muscle loss and fasticulations for about a year and it has gottten increasingly worse.They thought he had multi-focal motor neuropathy but he did not have the antibodies, or any conduction block on his Emg's. So they seem stumped and now think its a type of als though he doesnt have foot drop, or exaggerated reflex. and other indicators. He is extremely upset and I can'thelp but feel that because they don't have a definitive diagnosis they are pointing to that. Anyone have similar experience or can suggest any other tests or avenues to follow. I really appreciate your help.

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@theresadono

My husband has been dealing with severe muscle loss and fasticulations for about a year and it has gottten increasingly worse.They thought he had multi-focal motor neuropathy but he did not have the antibodies, or any conduction block on his Emg's. So they seem stumped and now think its a type of als though he doesnt have foot drop, or exaggerated reflex. and other indicators. He is extremely upset and I can'thelp but feel that because they don't have a definitive diagnosis they are pointing to that. Anyone have similar experience or can suggest any other tests or avenues to follow. I really appreciate your help.

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Hello @theresadono, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I just read the patient's story that sounds like it might be similar to what your husband is experiencing.

Excerpt from article below – "My diagnosis changed from benign fasciculation syndrome (BFS) to cramp … I do not have amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS) and …" – Living Each Day to the Fullest – GBS/CIDP Foundation: https://www.gbs-cidp.org/patient-stories/living-each-day-to-the-fullest/

Have you thought about seeking help or a second opinion from a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Treatment of peripheral neuropathy in both legs; medications utilized by prescription; non-prescription medications, trouble sleeping through

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I’m new to the group as of today. I have poly neuropathy. I’ve had two EMG tests, and I’ve gotten a little worse. Sometimes (right now), the pain is so bad I can’t stand it, but the main thing bothering me is loss of balance. I can be walking across the room, or even standing, and I’ll fall down. I can’t hardly get up when I fall down, which is troubling. I use a cane, except in my home, because everything is level, and I hold on to walls, furniture, etc. It started about 12 years ago as tingling in my right foot, so I went to foot doctors. The foot doctors finally said it was coming from my back, so I went to back doctors. The back doctors said, no, it was my feet. I have cervical stenosis and degenerative disk disease and other back problems, but the neurosurgeon says the PN isn’t coming from my neck or back.has anyone had luck with surgery?

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