Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

REPLY
@southwind

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

Jump to this post

Hello and welcome! Wish I could say glad to have you but, truthfully I'd rather you not need to be here. Life has strange twists and turns so here you are and here we are! It sounds like you are doing a great job at be self sufficient and proactive. Soak up the knowledge in this forum and remember we are all very different with different experiences especially when it comes to neurological disorders. 2020 can't come fast enough for you, I'm sure. Sorry, you must wait but being your own advocate is one of the best things you can do so, keep up the good work!!! Take care and my good wishes are sent your way.
Rachel

REPLY
@southwind

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

Jump to this post

Good morning @southwind. Welcome to Connect. You have evidently soaked up a lot of good information about neuropathy. I am sorry your introduction was so painful and that you have to wait for an appointment. That being said, most of the Connect members encumbered by this condition have had similar journeys. Hang in there with us. There is nothing but good will and loving kindness. Be free of suffering today. Chris

REPLY
@southwind

Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions…yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!

June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.

Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.

Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”

Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.

Thank you and your team for being here!!

Jump to this post

Hi Colleen, my story is similar to yours including the planters fasciitis , and not being able to see a neurologist until January. In addition to what you are doing, I went off my statins, am taking, gabapentin ( so far it doesn't help, but sometimes helps me sleep) Alpha Lipolic Acid, CBD oil, neuropathic shoes, acupuncture, massage therapy, a chiropractor, and pilates. This is expensive and time consuming. The acupuncture and massage therapy seem to be helping a bit, but my conclusion is that PN has a mind of its own and some days are better than others. Have you had blood work to check for autoimmune diseases or low B 12. Mine is idiopathic which seems to make it harder to treat. So, know you are not alone.

REPLY

Thanks for adding me to this group. I’m not totally sure if it’s the right one (! do hope so, the posts are so helpful and friendly!). I’ve been diagnosed with parasthesia and am still in the process of tests. It sounds pretty similar to neuropathy, but (luckily) without pain, just crawling and tingling sensations. Will be checking back once I get a firm diagnosis. Thank heavens for the wisdom of the masses and the kindness of strangers…😊

REPLY

@moragsmum, Good morning and welcome to Connect. Our mission is to improve the quality of life for every member. Although we cannot diagnose or prescribe, we can share our experience with all the trials and tribulations. It appears we are all somewhat involved with symptoms generated by nerves and their function, It would be interesting and helpful to others if you could share the tests you are undergoing so others could benefit.

Do your symptoms come and go? Are they in a particular area of your body? Neuropathy is listed as one of the factors in diagnosing Paresthesia. I am going to welcome @johnbishop to this conversation. His journey has been somewhat similar with numbness and tingling with no pain,

When is your next appointment? May you be safe and protected. Chris

REPLY
@moragsmum

Thanks for adding me to this group. I’m not totally sure if it’s the right one (! do hope so, the posts are so helpful and friendly!). I’ve been diagnosed with parasthesia and am still in the process of tests. It sounds pretty similar to neuropathy, but (luckily) without pain, just crawling and tingling sensations. Will be checking back once I get a firm diagnosis. Thank heavens for the wisdom of the masses and the kindness of strangers…😊

Jump to this post

Hello @moragsmum, Welcome to Connect. I hope you are able to check back with us once you have a diagnosis. From what I've read about Paresthesia, treatment depends on the underlying cause.

NIH – Paresthesia Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Paresthesia-Information-Page
Cleveland Clinic – Numbness: https://my.clevelandclinic.org/health/symptoms/21015-numbness

@moragsmum may I ask how long you have had the symptoms before you went to the doctor?

REPLY

Things began this August with an appallingly itchy scalp, which progressed to the nape and presented as burning – and is still there. In September the crawling sensation began throughout my body. Acupuncture helps, I think, but a weekly session is getting a bit costly. The sensation is now tickling in my eyelids, brows, throat, and upper lip (what a litany). I saw two dermatologists first, who weren't much help, and a neurologist last week, am hoping for some clarity and definition from the tests he ordered.

REPLY
@moragsmum

Things began this August with an appallingly itchy scalp, which progressed to the nape and presented as burning – and is still there. In September the crawling sensation began throughout my body. Acupuncture helps, I think, but a weekly session is getting a bit costly. The sensation is now tickling in my eyelids, brows, throat, and upper lip (what a litany). I saw two dermatologists first, who weren't much help, and a neurologist last week, am hoping for some clarity and definition from the tests he ordered.

Jump to this post

The MS Foundation's magazine has an article that talks about parathesia that may give you some more information.

13 Points about the Pesky Skin Sensations of Paresthesia
https://www.msfocusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia

Have you already had the tests ordered by neurologist? Hope they will help you find a better treatment.

REPLY
@johnbishop

The MS Foundation's magazine has an article that talks about parathesia that may give you some more information.

13 Points about the Pesky Skin Sensations of Paresthesia
https://www.msfocusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia

Have you already had the tests ordered by neurologist? Hope they will help you find a better treatment.

Jump to this post

Thanks John! Will check it out. I'm having EMG tests this evening, and a
CRP bood test tomorrow.

On Mon, 9 Dec 2019, 16:03 Mayo Clinic Connect, wrote:

>
>
> Mayo Clinic Connect
> *Reply by* *@johnbishop
> *
> on Mon, Dec 9
>
> *Reply*
> The MS Foundation's magazine has an article that talks about parathesia
> that may give you some more information.
>
> 13 Points about the Pesky Skin Sensations of Paresthesia
> —
> https://www.msfocusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia
>
> Have you already had the tests ordered by neurologist? Hope they will help
> you find a better treatment.
> VIEW & REPLY
>
> or reply to this email to respond.
>
> *This Discussion is a part of Neuropathy
> *
> ——————————
> Unsubscribe
>
> from this thread.
>

–000000000000980db7059945e5c5
Content-Type: text/html; charset="UTF-8"
Content-Transfer-Encoding: quoted-printable

Thanks John! Will check it out. I'm having EMG tests =
this evening, and a CRP bood test tomorrow.On Mon, 9 Dec 2019, 16:03 Mayo C=
linic Connect, wrote:=C2=A0=
Mayo Cl=
inic ConnectReply by @jo=
hnbishop on Mon, Dec 9ReplyThe MS Foundation's magazine has an article that talks about parathesi=
a that may give you some more information.

13 Points about the Pesky Skin Sensations of Paresthesia
https://www.ms=
focusmagazine.org/Magazine/Magazine-Items/13-Points-about-Paresthesia

Have you already had the tests ordered by neurologist? Hope they will help =
you find a better treatment.VIEW & REPLY or reply=
to this email to respond.This Discussion is a part of NeuropathyUnsubscribe from this t=
hread.

–000000000000980db7059945e5c5–

REPLY
@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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I have been living with peripheral neuropathy off and on for 20 years after a bout with transverse myelitis which was diagnosed at John Hopkins. Ten years ago and five years ago redid MRIs and was diagnosed with idiopathic neuropathy but luckily no further lesions. Have done pretty well with 1100 mg of gabapentin until the last month and cannot seem to get much relief even with close to 2000. Happy to find this group to hear how others manage PN.

REPLY
@aponce

I have been living with peripheral neuropathy off and on for 20 years after a bout with transverse myelitis which was diagnosed at John Hopkins. Ten years ago and five years ago redid MRIs and was diagnosed with idiopathic neuropathy but luckily no further lesions. Have done pretty well with 1100 mg of gabapentin until the last month and cannot seem to get much relief even with close to 2000. Happy to find this group to hear how others manage PN.

Jump to this post

Hello @aponce, Welcome to Connect. Hoping other members can also share what helps them manage PN. I've posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

Have you tried any alternative therapy or treatments to help with the pain?

REPLY
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