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.

@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…😊

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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?

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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.

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@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.

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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.

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@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.

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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
> *
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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--

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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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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.

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@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.

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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?

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Since it has been under control, and periodic, i have learned to live with it. I am in the process of getting my State i.d. for medical marijuana since it has gotten much worse.

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I was going to try gummies but found out and going to ask on my Friday’s appointment in detail about this too. When I did try and it was found in my urine I was told I am not allowed too do any weed.
So I was confused and quick answer over phone was is if I’m on Percocet then and can’t be or have marijuana in urine or can’t they will stop my Percocet Prescription
I’m not at a point where I can pick weed when it’s not
Given to me through my doctor and I really don’t know much about it.
Wish they would embrace it more study it and help people that might need it.
So is it Kaiser??? Or federal or because I’m over 60 and they are afraid I’m going to fall. Who knows.

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@cocodab

I was going to try gummies but found out and going to ask on my Friday’s appointment in detail about this too. When I did try and it was found in my urine I was told I am not allowed too do any weed.
So I was confused and quick answer over phone was is if I’m on Percocet then and can’t be or have marijuana in urine or can’t they will stop my Percocet Prescription
I’m not at a point where I can pick weed when it’s not
Given to me through my doctor and I really don’t know much about it.
Wish they would embrace it more study it and help people that might need it.
So is it Kaiser??? Or federal or because I’m over 60 and they are afraid I’m going to fall. Who knows.

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@cocodab I just read your post. I am feeling fortunate that my pain management program suggests the use of marihuana and obtaining my medical marijuana card. I have done this and use sublingual CBD/THC. I continue with percocet. The CBD without THC helps with my extreme anxiety which adds to my pain.

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I believe there is much good with CDC/THC. The medical field should learn and keep an open mind. Bottom line enough is not being done with people with pain and or I feel to help listen be Compassionate and even make us oable to operate if possible.

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