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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.

krisztina | @krisztina | Nov 25, 2023
In reply to @harley22 "As having CIDP. Right now I’m at a standstill on no meds except Tramadol for pain..." + (show)
@harley22

As having CIDP.
Right now I’m at a standstill on no meds except Tramadol for pain and Metoprolol for my BP.
Have been on all the meds and IVIG infusions over the years with no help.
Meanwhile my balance is awful, need to use cane or walker to get around.
My feet have no feeling in them at all.

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Are you able to flex your foot? I have no feeling in my foot either and after getting the foot drop, I couldn’t stand without support. Then I got braces. After getting used to them in a few weeks my balance improved tremendously, I am moving freely now with braces. Also a physical therapist can help with exercises with balance

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 25, 2023
In reply to @krisztina "Dear All, Thank you for this support group! My name is Krisztina, I am a violinist..." + (show)
@krisztina

Dear All,

Thank you for this support group! My name is Krisztina, I am a violinist and I have a 2 year old daughter. I joined this group because I think it would be a great place to share my concerns, challenges with fellow neuropathy patients, because you have better insights, knowledge and empathy than anyone else.
I have a rare hereditary neuropathy, called HSAN Type 1A. I was diagnosed 2020. I don’t feel temperature, touch or pain in my legs knee down, only squeezing and vibration. I do have some “phantom” nerve pain, like electrical shock, but it is not so bad that I would need painkillers. I also have foot drop, so I am unable to flex my ankles, I need braces for safe walking. This year is particularly challenging as I broke my left foot in March as I didn’t lift my foot high enough and caught up in the floor. 2nd,3rd and 4th metatarsals.Then in May I broke the left big toe. No accident, no known injury. It didn’t heal yet, but one of the doctor I have seen said I can just start walk again without the cast boot. 2 weeks ago I broke the 2nd and 3rd metatarsals again in a different place. I am just about to solve this puzzle that probably my bones got too weak from being in the boot, that they can break very easily. Is there anyone out there went through something similar? Perhaps you have some tips how to start walking and do activities again safely? I do take D3 5000i and also Calcium 1000mg, also trying to take in calcium in food form. I would like to hike again, doing yoga again without braking any bones.

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Hello @krisztina, Welcome to Connect. You are definitely not alone. I think most of us that have been dealing with neuropathy for a long time can relate to your concerns and challenges and hopefully offer some suggestions that might help. I think you have already started on what I think is one of the best things you can do to help - learning as much as you can about your condition and what treatments may be available that might help. If you haven't already seen the Foundation for Neuropathy website, it is a wealth of information and helpful webinars.

--- Living well with Neuropathy: https://www.foundationforpn.org/living-well/
--- Foundation for Peripheral Neuropathy YouTube Channel hereditary neuropathy videos:
https://www.youtube.com/@foundationforperipheralneu4122/search?query=hereditary

Have you done any research on hereditary neuropathy?

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1 reply
krisztina | @krisztina | Nov 25, 2023
In reply to @johnbishop "Hello @krisztina, Welcome to Connect. You are definitely not alone. I think most of us that..." + (show)
@johnbishop

Hello @krisztina, Welcome to Connect. You are definitely not alone. I think most of us that have been dealing with neuropathy for a long time can relate to your concerns and challenges and hopefully offer some suggestions that might help. I think you have already started on what I think is one of the best things you can do to help - learning as much as you can about your condition and what treatments may be available that might help. If you haven't already seen the Foundation for Neuropathy website, it is a wealth of information and helpful webinars.

--- Living well with Neuropathy: https://www.foundationforpn.org/living-well/
--- Foundation for Peripheral Neuropathy YouTube Channel hereditary neuropathy videos:
https://www.youtube.com/@foundationforperipheralneu4122/search?query=hereditary

Have you done any research on hereditary neuropathy?

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I did research, when I got diagnosed I found a facebook group with people same condition. That is where I heard about the supplement treatment that can help this kind of neuropathy.

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rca | @rca | Nov 26, 2023
In reply to @casd57 "I've had it since the first of the year... At that time I held off going..." + (show)
@casd57

I've had it since the first of the year... At that time I held off going to the Doc til February... He offers Gabapentin..I didn't like and it didn't help it so he switched me to Pregabalin..by the time and dosage it helped it made me goofy and not sure-footed... So I got off the Meds.
At this time I could only mow half my lawn at a time and I would have to go lay down because my feet hurt so bad I'd almost go to tears
Also at this time, I could hardly go to work..I was starting to worry about my job...
I did a bunch of research and came up with this:
Take this daily:
R-ALA 600mg
B1 Benfotiamine 300-600mg
B6 Pyridoxal-5-Phosphate (No HCL types) 80-100mg
B9 5-Methytetrahyofolate 400 mcg
B12 Methylcobalamin 1000-3000mg
L-Citrulline 1000mg
Acetyl-L-Carnitine 1000-3000mg
NO Fillers in the pills like:
magnesium Stearate
Gelatin
Maltodextrin
Dyes-Colorings
Titanium Dioxide
I also have one of those feet shockers... I've gone through two of those cheap $20 ones...they work great at first and then they barely work.. I think the wiring is fragile and easily broken
So I'm looking for a better one because I think it helps with the pain....

After taking this combination for a few months... my feet are a lot better...I still have pain but it is manageable...
In fact, we just went to Disney World, Epcot, and Universal and we walked 8-10 miles a day
I have a Google smartwatch so here is what I have found.... at about 1500 steps it starts hurting..by 5000 steps I need to take small breaks and then it's fine for a while but at 5000 is the peak of the pain.
Small 5-10 breaks and my feet are ready to go...
Also, I play guitar.........I can feel it in my hands also ..so it's not just my feet but my hands(mainly fretting hand) are very minor pain

As usual...this might not work for everyone...We are all different but I hope it helps some people with healing your nerves and is a very...very...slow process, so don't expect overnight relief

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I can only walk a few steps. I do exercise on the bike and do tai chi and other things. I used to bike outside and walk but now I am frustrated since I am no longer able and feel stuck in this body. No I don't have friends or family to be with me. Yes, I pay someone to walk my little dog and I go with hm. People are nasty to me as I try to explain and they don't like my attitude at all.

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rca | @rca | Nov 26, 2023

If I had people in my life I would experience an condition in a different way. I had other health challenges and having someone there to go out with, in the car with, take a ride with, share a meal with, makes a huge difference.

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DawnG | @imagine1 | Nov 26, 2023
In reply to @twaytrust "Hello All; Has anyone experienced that acupuncture assists with neuropathy? JL, TO" + (show)
@twaytrust

Hello All;

Has anyone experienced that acupuncture assists with neuropathy?
JL, TO

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I tried acupuncture. Had six sessions. Found it gave some temporary relief, but not a lot. But that's just me, could be different for someone else!

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rllh5403 | @rllh5403 | Dec 3, 2023

I'm new to the group and having a hard time navigating the system. What do the blocks with numbers on them represent?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 3, 2023
In reply to @rllh5403 "I'm new to the group and having a hard time navigating the system. What do the..." + (show)
@rllh5403

I'm new to the group and having a hard time navigating the system. What do the blocks with numbers on them represent?

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The blocks at the bottom are like page numbers. If you click one it will take you to that page in the discussion.

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mrspgee1948 | @mrspgee1948 | Dec 3, 2023

Has anyone been diagnosed with Laringeal neuropathy? It took me seven years to finally find a doctor who was able to diagnose it. I have been on gabapentin but the somnolence is starting to interfere with my daily functioning. If this doesn't work, my next step is to see a chronic cough specialist at a Cough Clinic (only several of them in FL - Mayo a five hour drive). Any suggestions? Many thanks.

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rllh5403 | @rllh5403 | Dec 5, 2023

I've never been to Mayo Clinic, but I have been to Cleveland Clinic and I highly recommend them. The neurologist I saw was Dr. Julia Bucklan; she was excellent.

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