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?

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

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@mamici1

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

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HI @mamici1 — Welcome to Connect. I also have small fiber PN, as well as PMR. My PMR is currently in remission. I have no medical training or background but I think I believe a skin punch biopsy is another test that will show nerve damage that may not be detectable by an EMG. Here is a site with some information that may be helpful:

Cleveland Clinic – Skin Biopsy for Small Fiber Sensory Neuropathy
https://my.clevelandclinic.org/health/diagnostics/17479-skin-biopsy-for-small-fiber-sensory-neuropathy

Are you currently taking any medications? The reason I mention it is that there are some drugs that are known to have a side effect of causing PN.

Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1

Does your doctor have any ideas or information on what might be causing your recent symptoms?

John

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@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

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@danielad You are doing that well! Teresa

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@johnbishop

Thanks, John. I found the list of meds that can cause neuropathy symptoms to be very informative. It provides some discussion material for my next visit to the doctor.

Teresa

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@robertlclark

Hi Colleen,
I have had Neuropathy in my left foot and left leg from stenosis. Tried many treatments and two lumbar laminectomies with little success. Now I have attended several seminars about stem cell treatments couple with other changes concerning meds, nutrition, laser treatments, EWOT, PNRT, vibration. Do you know if these treatments are effective or just failed treatments? Most of these treatments, even in combination are very expensive and most not covered by insurance.
Just something separate. How do I find responses to my posts when I return to this site?

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@robertlclark you'll find more information about neuropathy and stem cells in this discussion on Connect:

– Stem Cell Therapy for Neuropathy https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

The short answer: Unfortunately, because of the complexity of the brain and spinal cord, little spontaneous regeneration, repair or healing occurs. Therefore, brain damage, paralysis from spinal cord injury and peripheral nerve damage are often permanent and incapacitating. It is very early days and research in neuroregeneration is ongoing. Beware of charlatans.

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@trwee

i was recently diagnosed with peripheral neuropathy and am on an almost max dose of gabapentin… with NO relief or progress/changes/improvements… help!

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Hello @trwee, @johnbishop has asked me to respond to you about the efficacy of including CBD in your medication regimen. First a question….if you are taking almost the max dose of gabapentin….would that be close to 3600 mg a day? How many times a day to you take the medication and how many mg in each dose? There may need to be some adjustment of dosage and time that it is taken. Please let your neurologist or other provider know about your experience with the medication. I take 900 mg at bedtime and it lasts through the night. CBD is a cannabinoid with documented good results for pain and discomfort. You can purchase unregulated CBD with a maximum of .05% THC online. That format is from the hemp plant. My experience is that CBD alone just doesn't work for me and I also prefer CBD culled from the marijuana plant. I do find tremendous pain relief from a 2-1 tincture. That means 2 parts CBD to 1 part THC. That level of THC makes all the difference. I use one dropper in my coffee at breakfast and another with tea at dinnertime. It is very important that you do not use any marijuana product on an empty stomach and that you do not combine it with any form of alcohol either before or after using it. It is also important that you purchase the product from a reputable dispensary. The medical marijuana industry is going to great lengths to extract the purest and best product. It gets better and better. I work with a knowledgeable coach employed by the dispensary. You do need someone to help you select appropriately and who can help you evaluate the results before moving forward. My best to you. Do stay in touch on Connect.

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@mamici1

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

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A normal EMG is very typical with small fiber neuropathy. As John mentioned, a skin punch biopsy or as I had last year at Mayo, a thermoregulatory sweat test (TST) .

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@mamici1

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

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Hi John, Thanks so much for your response. I take the following meds/supplements: Prednisolone 30mg, Aspirin 75 mg,
which I am looking forward to. it has taken months to get this appointment as I live in the D3 1500 mg, GI Probiotic Supplement, Omega 3 w/Vit D, Magnesium Citrate 200mg, Organic Raw Bone B Complex 360 mg, Propranolol 20 mg. None of which I saw on the list (which was very helpful by the way! )

I am not on statins, but should be. My cholesterol is very high and I have the same conversation each month with my GP about staring on Simvastatin; I refuse to start taking it now with al the other issues.

As mentioned my bloods are taken every 8-10 weeks and my sugar levels have always been within normal range.

I have an appointment with a Neurologist on the 21st of this month, which I am looking forward to. It has taken a couple months to get this appointment as I live in the UK and had to beg for a referral under the NHS. ( I am an American Expat living her with my husband. )

Thank you so much for the response… It is good to know I am not alone!
Melissa

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@mamici1

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

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Hello, Thank you that was a good tip… I will be asking the Neurologist about both, when I see him/her on the 21st of this month. Many thanks, Melissa

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Hello all — I finally put all my notes together for the Saturday, August 4th meeting of the Minnesota Neuropathy Association. I'm attaching a PDF version with links to websites with more information on what was presented. The meeting was very informative and I learned a lot — it's too bad I have a retention problem. Hey…that's why I take notes!

Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pacel

John

Shared files

18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)

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Hello @johnbishop . Thank you for this amaizing information , and for educating us on What to expect in the feature. Do you have any idea when those new stem cell treatments will be available ? Many countries seem to be ahead of us, and a lot of people are going to spand their money outside the USA. That’s going to be a loss for us ? Can patients with trauma neurophaty or idiopathic be more fitt to try the stem cells , since it’s not autoimmune or diabetes ???

Thank you for the updates! !!

Best to you !!

Liked by Dee

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Hi @marinelastef — You are welcome for the updates. Unfortunately I'm just a passenger on the stem cell treatment research journey. It's really interesting and promising stuff but for neuropathy I do not think it's close…just my opinion based on what I've read and researched. I think when we see clinical trials followed by clinical studies on stem cell treatment for repairing or regenerating nerve cells that will be the first signs of real hope. I believe I heard the speaker at the meeting say that all of the big pharma money for research is going into stem cell treatment clinical trials for cancer because it has the greatest promise.

Who knows though…that's why I keep reading, searching and learning whatever I can. Also helps me meet my daily goal – learn one new thing every day. What's great about that is I am an old guy and sometimes the new thing I learn is something that is not really new. I just forgot I had read it before ☺.

Have a great weekend!

John

Liked by Dee, marystefy

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Hi John, please go to You Tube and take a look at Dr. Michael Johnson’s video briefings on stem cell treatments for neuropathy and the many studies he identifies for this treatment. Dr. Johnson runs a treatment facility in Appleton, WI. Some amazing stuff.

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@johnbishop

Hi @marinelastef — You are welcome for the updates. Unfortunately I'm just a passenger on the stem cell treatment research journey. It's really interesting and promising stuff but for neuropathy I do not think it's close…just my opinion based on what I've read and researched. I think when we see clinical trials followed by clinical studies on stem cell treatment for repairing or regenerating nerve cells that will be the first signs of real hope. I believe I heard the speaker at the meeting say that all of the big pharma money for research is going into stem cell treatment clinical trials for cancer because it has the greatest promise.

Who knows though…that's why I keep reading, searching and learning whatever I can. Also helps me meet my daily goal – learn one new thing every day. What's great about that is I am an old guy and sometimes the new thing I learn is something that is not really new. I just forgot I had read it before ☺.

Have a great weekend!

John

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@johnbishop , if I’m not mistaken, Mayo already has clinical trials on repairing nerve damage. I found out that the trail is formed by 10 patients with nerve problems. That should tell us that they have the formula but not everyone is privileged to try it. However, I think that people with neuropathic trauma have no guilt in their illness, therefore they deserve what was taken away from them to be granted .

Thank you John for being our advocate !!

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@robertlclark

Hi John, please go to You Tube and take a look at Dr. Michael Johnson’s video briefings on stem cell treatments for neuropathy and the many studies he identifies for this treatment. Dr. Johnson runs a treatment facility in Appleton, WI. Some amazing stuff.

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Hi Robert @robertclark,

He does make it sound good and it would be amazing but I'm pretty skeptical. No FDA approval, no studies, lots of money. Then there is the Better Business Bureau rating of his business which adds more doubt for me. To coin a phrase from one of the sites, "it's like the wild west out there with stem cell clinics".

Optimal Health Stem Cell and Wellness
https://www.bbb.org/wisconsin/business-reviews/chiropractors-dc/optimal-health-stem-cell-and-wellness-in-appleton-wi-1000025371/alerts-and-actions

Selling stem cell claims via sponsored TV news – “horribly wrong” health news
https://www.healthnewsreview.org/2016/07/selling-stem-cell-claims-via-sponsored-tv-news-horribly-wrong-health-news/

Be Aware of Seven Questionable Clinics
https://www.medscape.com/viewarticle/874296_4

It would be great if someone who tried it could share with us. It would be great if it was successful in nerve regeneration.

John

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