1. < Neuropathy
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.

Mentor
John, Volunteer Mentor | @johnbishop | Dec 5, 2022
In reply to @phoenix29412 "Hello, I have loss of sensation on the left side of my body. Facial down to..." + (show)
@phoenix29412

Hello, I have loss of sensation on the left side of my body. Facial down to toes. Both feet have that "numbness sensation as well" Sometimes. my right hand and fingers. Nerve test on November 18 showed no damage to nerves (?? so then why are my nerves not working properly). One nerve they noted was slightly out of whack.

My PCP is not concerned. She told me that she has several patients with a lower B12 than I. My B12 was 203. She has me on 1,000 mg B12 a day. My neurologist whom I met on August 18 (symptoms started August 8) did some blood tests and ordered a brain Catscan (I have a piece of metal so no MRI). Catscan was fine. Then told me I'm probably focusing on the numbness too much. "Don't think about it so much and it might go away".
They both have been told by me that I am a vegetarian. We are at MUSC in Charleston, SC.

So, I'm starting to take 2,000 mg a day on my own. I've heard from others in FaceBook groups that I should probably be taking 4,000 mg a day of B12 since I cannot get the shots through my PCP.

I have pulmonary sarcoidosis which my pulmonary doctor says is in remission and now MAC has showed up in my sputum again - a different strain - and they asked for a repeat sputum before starting any treatment.

I requested B12 shots from the start - I prefer to be aggressive on treatment so it does not get worse and hopefully I can recover from this numbness. PCP said No to that and Neurology agreed with her.

Also have had a barium swallowing test, stomach emptying test as I feel full right away but apparently my stomach is a fast dump. Had an endoscopy and all is fine. No idea if I'm lacking intrinsic factor or what else.
I asked PCP to explain the flags in my blood work and she replied "this is what happens when patients can see their records". She was very condescending.

I just started reading Could It Be B12? An Epidemic of Misdiagnoses
Book by Jeffrey J. Stuart and Sally M. Pacholok

I could really use some feedback and guidance.
What do I do?

Jump to this post

@phoenix29412, My best advice is to keep doing what you are doing - asking questions. I would be a little irritated myself if my PCP was condescending when asked a simple question which is part of their job to explain to their patient. I might be condescending right back and ask - would you rather I look to Dr. Google to find my answers? Then explain that you want to learn as much as you can about your health so that you can make more informed decisions.

Here's a good article on B12 deficiency with reference links to studies that you might find helpful.
-- 9 Signs and Symptoms of Vitamin B12 Deficiency:
https://www.healthline.com/nutrition/vitamin-b12-deficiency-symptoms

Also, here are a couple of "tools" you may want to add to your working with doctors arsenal:
-- Tools for the Visit: https://patientrevolution.org/visit-tools
-- Communication Barriers: https://patientrevolution.org/barriers

REPLY
1 reply
eep | @eep | Dec 5, 2022
In reply to @eep "I started out doing a few things for balance. My body so messed up it's difficult..." + (show)
@eep

I started out doing a few things for balance. My body so messed up it's difficult to exercise. I have both knee replaced, I have a bad back, failed surgery, I have both shoulders reverse replacements, my right one done 4 times. I have a plate and some pins in my left wrist, and I have my right femur broken in two places in the last year. Exercise??? Not an easy thing to do when you can't stand and balance. I've tried some chair yoga, that wasn't easy either. I also have fibromyalgia my body hurts everywhere. I'm lucky I'm still moving. And of course exercise isn't my favorite thing to do. If I thought it was worth while, I would have kept it up. I get shooting pains all over like electric shocks. I have a particularly bad one where they took bone marrow out of butt. Sometimes, I'm sitting and all of a sudden I have to scream in pain, because the shocks hurt so bad. i get a lot of strange looks from people when that happens. Right now I think it's affecting my bowl and bladder. Having problems going to the bathroom. What's next? I can't wait till God says come with me.

Jump to this post

Thank You, I can use all the hugs people give me.

REPLY
phoenix29412 | @phoenix29412 | Dec 6, 2022
In reply to @johnbishop "@phoenix29412, My best advice is to keep doing what you are doing - asking questions. I..." + (show)
@johnbishop

@phoenix29412, My best advice is to keep doing what you are doing - asking questions. I would be a little irritated myself if my PCP was condescending when asked a simple question which is part of their job to explain to their patient. I might be condescending right back and ask - would you rather I look to Dr. Google to find my answers? Then explain that you want to learn as much as you can about your health so that you can make more informed decisions.

Here's a good article on B12 deficiency with reference links to studies that you might find helpful.
-- 9 Signs and Symptoms of Vitamin B12 Deficiency:
https://www.healthline.com/nutrition/vitamin-b12-deficiency-symptoms

Also, here are a couple of "tools" you may want to add to your working with doctors arsenal:
-- Tools for the Visit: https://patientrevolution.org/visit-tools
-- Communication Barriers: https://patientrevolution.org/barriers

Jump to this post

Thank you John.
In my frustration I do use 'Dr. Google", as a resource and source of information when I feel as if I'm fumbling in the dark. Right? My husband is a cancer researcher and every piece of information I find my husband always asks me "Where did you find that? What source?" so I always also look up Mayo Clinic and Cleveland Clinic as well.
I've joined several FaceBook support groups where real people are trying to deal with similar problems. It's heartbreaking.
I'm going through my medications trying to weed out ones that may be contributing to depleted B12 (perhaps the main culprit for this left side sensation loss and tingling).
I'm taking 2 tabs of methotrexate (down from 4) a week and my husband said that the people with neuropathy and methotrexate are taking much bigger amounts.
My GI doctor put me on Prilosec (a proton pump inhibitor which I am NOT taking and Pepcid. I have very sporadic reflux. No appetite although I do get hungry once in a while. Lost smell and taste years ago and am on Marinol - it helps me to force myself to eat.
I'm frightened that it is a malabsorption issue. Intrinsic factor?
Thank you for the resources. And thanks for listening.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 6, 2022
In reply to @phoenix29412 "Thank you John. In my frustration I do use 'Dr. Google", as a resource and source..." + (show)
@phoenix29412

Thank you John.
In my frustration I do use 'Dr. Google", as a resource and source of information when I feel as if I'm fumbling in the dark. Right? My husband is a cancer researcher and every piece of information I find my husband always asks me "Where did you find that? What source?" so I always also look up Mayo Clinic and Cleveland Clinic as well.
I've joined several FaceBook support groups where real people are trying to deal with similar problems. It's heartbreaking.
I'm going through my medications trying to weed out ones that may be contributing to depleted B12 (perhaps the main culprit for this left side sensation loss and tingling).
I'm taking 2 tabs of methotrexate (down from 4) a week and my husband said that the people with neuropathy and methotrexate are taking much bigger amounts.
My GI doctor put me on Prilosec (a proton pump inhibitor which I am NOT taking and Pepcid. I have very sporadic reflux. No appetite although I do get hungry once in a while. Lost smell and taste years ago and am on Marinol - it helps me to force myself to eat.
I'm frightened that it is a malabsorption issue. Intrinsic factor?
Thank you for the resources. And thanks for listening.

Jump to this post

@phoenix29412, A couple of more of my favorite sites if you haven't already found them...

Google Scholar for medical research information (can sort by date):
-- https://scholar.google.com/

FDA's Health Fraud Page
— https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
— https://nccih.nih.gov/health/decisions
— https://www.nccih.nih.gov/health/pain

REPLY
selmon30 | @selmon30 | Dec 6, 2022

My mother was sick in 2018, diagnosed with everything except Poems. Finally went to Mayo Clinic in 2021, diagnosed with Poems. We just started revelmid (spelling may be off). Now she been taking it for only a month off and on as required I guess, she has suddenly broken out with a skin rash all over the body lie hives. Is this related to Poems, cause everything else has been ruled out

REPLY
1 reply
cookierockwell | @cookierockwell | Dec 6, 2022
In reply to @phoenix29412 "Hello, I have loss of sensation on the left side of my body. Facial down to..." + (show)
@phoenix29412

Hello, I have loss of sensation on the left side of my body. Facial down to toes. Both feet have that "numbness sensation as well" Sometimes. my right hand and fingers. Nerve test on November 18 showed no damage to nerves (?? so then why are my nerves not working properly). One nerve they noted was slightly out of whack.

My PCP is not concerned. She told me that she has several patients with a lower B12 than I. My B12 was 203. She has me on 1,000 mg B12 a day. My neurologist whom I met on August 18 (symptoms started August 8) did some blood tests and ordered a brain Catscan (I have a piece of metal so no MRI). Catscan was fine. Then told me I'm probably focusing on the numbness too much. "Don't think about it so much and it might go away".
They both have been told by me that I am a vegetarian. We are at MUSC in Charleston, SC.

So, I'm starting to take 2,000 mg a day on my own. I've heard from others in FaceBook groups that I should probably be taking 4,000 mg a day of B12 since I cannot get the shots through my PCP.

I have pulmonary sarcoidosis which my pulmonary doctor says is in remission and now MAC has showed up in my sputum again - a different strain - and they asked for a repeat sputum before starting any treatment.

I requested B12 shots from the start - I prefer to be aggressive on treatment so it does not get worse and hopefully I can recover from this numbness. PCP said No to that and Neurology agreed with her.

Also have had a barium swallowing test, stomach emptying test as I feel full right away but apparently my stomach is a fast dump. Had an endoscopy and all is fine. No idea if I'm lacking intrinsic factor or what else.
I asked PCP to explain the flags in my blood work and she replied "this is what happens when patients can see their records". She was very condescending.

I just started reading Could It Be B12? An Epidemic of Misdiagnoses
Book by Jeffrey J. Stuart and Sally M. Pacholok

I could really use some feedback and guidance.
What do I do?

Jump to this post

Please call your insurance company today, and switch to a new PCP. You deserve better care, and to be treated better.

Meanwhile, where I am, you can go to one of those IV bars, and get a shot of B12 for $20. If you can afford it, it just might even be cheaper than high dose B12 supplements, and would work faster and better.

Best wishes,
Cookie

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Dec 6, 2022
In reply to @selmon30 "My mother was sick in 2018, diagnosed with everything except Poems. Finally went to Mayo Clinic..." + (show)
@selmon30

My mother was sick in 2018, diagnosed with everything except Poems. Finally went to Mayo Clinic in 2021, diagnosed with Poems. We just started revelmid (spelling may be off). Now she been taking it for only a month off and on as required I guess, she has suddenly broken out with a skin rash all over the body lie hives. Is this related to Poems, cause everything else has been ruled out

Jump to this post

Welcome @selmon30, I don't have any experience with POEMS or revlimid but a rash is listed as one of the common side effects of the drug:
-- Common Side Effects of REVLIMID:
https://www.revlimid.com/common-side-effects

There are also a couple of discussions that you might find helpful for other questions:
-- Husband with POEMS Syndrome:
https://connect.mayoclinic.org/discussion/husband-with-poems-syndrome/
-- Is anyone here talking Revlimid? If so please share with me:
https://connect.mayoclinic.org/discussion/is-anyone-here-talking-revlimid-for-chemo-if-so-please-share-with-me/

REPLY
seanmacbeth | @seanmacbeth | Dec 7, 2022
In reply to @johnbishop "Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is..." + (show)
@johnbishop

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

Jump to this post

Couldln't agree more with the definition of idiopathic. Everybody gets it in the end; just depends on how long you live in this new world of electromagnetic fields bathing us all in a toxic atmosphere of cell towers, routers, modems, cell phones, further distancing us from nature. We're alone now in this strange new world. I take no Rx meds, just researching any herbs and supplements from the naturopathic world of and TCM medicine. Exercise helps greatly; also massage and reflexology. My latest diagnosis: axonal multi sensory motor neuropathy. Just another name. Neurology has no clue. Lifestyle is everything. And what we feed this amazing body. If we protect the nervous system early on, perhaps this could all be avoided and delayed.

REPLY
daimudan | @daimudan | Dec 7, 2022
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

Jump to this post

Thanks so much for this group. Until I got the Mayo email, I had no idea there was a support group!

REPLY
1 reply
larrymcj | @larrymcj | Dec 8, 2022

Hi to all! Like many others, I want to learn more about any ways to mitigate the symptoms and deal with it better. 13 years after being diagnosed, I keep waiting for it to max out, but apparently, it keeps getting worse.

I have it only in both feet and when my neurologist first tested me, he also did an extensive set of bloodwork. Turns out I also have MGUS, so I’m glad he associated the two conditions so I could hook up with a hematologist.

I plan to read everything already posted to see if there’s any relief in sight. I can’t take the usual drugs that help because they’re metabolized in the kidneys and I only have one. Happy to have found this group!

REPLY
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