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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.

Mentor
John, Volunteer Mentor | @johnbishop | Oct 20, 2017
In reply to @michelewithonel "Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy..." + (show)
@michelewithonel

Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy issues for about 4 years now. My left hand has contractures and muscle wasting and the doctors I have been to in the Detroit, MI area can not figure out what is causing it. So here I am, a patient at the Mayo Clinic in Rochester, MN, Hoping that I find my "Dr. House". It has been a long and tiring journey from doctor to doctor, test after test, being given diagnosis after diagnosis only to be eventually told that no, I really didn't have those issues or diseases.

Jump to this post

Hello Michele (@michelewithonel), Welcome to Connect. We are happy you found us and hoping you are able to find an answer while at the Rochester Mayo Clinic. Do they have more tests scheduled for you?

If you have some time on your hands, you may want to browse through the following discussion if you feel like you need something to do:

What are your suggestions for a quiet place to relax between appts?
https://connect.mayoclinic.org/discussion/what-are-your-suggestions-for-a-quiet-place-to-relax-between-appts/bookmark/?ajax_hook=action&_wpnonce=1cafe530ef
John

REPLY
Darlia | @darlia | Oct 20, 2017

Hi Michelle,

I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY.
I am being referred to the Mayo I n Rochester also and I live in NE Missouri. Recently I have been having contractions of my right upper arm and hand which usually happens at night when I've been more relaxed. My hand wants to tighten and form like a "claw". It's happening for like 1hr when I get it. Found massage helps for the arm part to calm down but so far the Dr.s haven't told me what it could be! My neurologist who I look to for answers has not had an answer. So let me ask you, which specialists have you seen?
I hope you get some answers too. Many people post on here, so maybe we'll get some help here!
Darlia

REPLY
2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 20, 2017
In reply to @michelewithonel "Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy..." + (show)
@michelewithonel

Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy issues for about 4 years now. My left hand has contractures and muscle wasting and the doctors I have been to in the Detroit, MI area can not figure out what is causing it. So here I am, a patient at the Mayo Clinic in Rochester, MN, Hoping that I find my "Dr. House". It has been a long and tiring journey from doctor to doctor, test after test, being given diagnosis after diagnosis only to be eventually told that no, I really didn't have those issues or diseases.

Jump to this post

Welcome, Michele @michelewithonel - I like the one last. I always have to tell people no E in my last name. I wish I lived closer to Mayo or even a great little hospital. But, alas, I like where I live, in the middle of nowhere. I have trust in the excellence of the Mayo staff to give you a correct diagnosis and treatment plan.

Jim

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 20, 2017
In reply to @michelewithonel "Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy..." + (show)
@michelewithonel

Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy issues for about 4 years now. My left hand has contractures and muscle wasting and the doctors I have been to in the Detroit, MI area can not figure out what is causing it. So here I am, a patient at the Mayo Clinic in Rochester, MN, Hoping that I find my "Dr. House". It has been a long and tiring journey from doctor to doctor, test after test, being given diagnosis after diagnosis only to be eventually told that no, I really didn't have those issues or diseases.

Jump to this post

@michelewithonel - I ALMOST always proofread what I write. I should figure out how to turn off auto spell. What I wrote was "I like the one l". My phone, thinking that it knows better than I what I'm thinking, posted "last" instead of "l", which is a lower case L.

Talking to myself - proofread everything!

And that's why they are called smartphones. Lol

Jim

REPLY
michelewithonel | @michelewithonel | Oct 20, 2017

Some of the doctors thought it may be something rheumatology should look at. They thought I had lupus, MS, Scleroderma, Lyme, to name a few. I have had EMG's that show it is my cervical spine but no Neurosurgeon will touch me saying the MRI doesn't show a problem. And that's been my frustration. A doctor will say that a test result points to something, I'll get excited thinking we have a diagnosis, only to be back at square one when they say (after more definitive tests) that it's not. so frustrating.

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 20, 2017
In reply to @darlia "Hi Michelle, I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY. I am being..." + (show)
@darlia

Hi Michelle,

I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY.
I am being referred to the Mayo I n Rochester also and I live in NE Missouri. Recently I have been having contractions of my right upper arm and hand which usually happens at night when I've been more relaxed. My hand wants to tighten and form like a "claw". It's happening for like 1hr when I get it. Found massage helps for the arm part to calm down but so far the Dr.s haven't told me what it could be! My neurologist who I look to for answers has not had an answer. So let me ask you, which specialists have you seen?
I hope you get some answers too. Many people post on here, so maybe we'll get some help here!
Darlia

Jump to this post

Hi, Darling @darlia - I'm waiting to hear from a neuro specialist to call and give me an appointment. This one has a double specialty - neurology and ENT. I have several issues going on at once, so there are multiple and overlapping conditions.

You're fortunate to live near a Mayo, where so many good specialists work under one umbrella.

My idiopathic pn has small fiber, myelin and autoimmune involvement, along with other things that seem to overlap pn.

I hope that both you and @michelewithonel find solutions and maybe some resolution at Mayo.

Jim

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 20, 2017
In reply to @michelewithonel "Some of the doctors thought it may be something rheumatology should look at. They thought I..." + (show)
@michelewithonel

Some of the doctors thought it may be something rheumatology should look at. They thought I had lupus, MS, Scleroderma, Lyme, to name a few. I have had EMG's that show it is my cervical spine but no Neurosurgeon will touch me saying the MRI doesn't show a problem. And that's been my frustration. A doctor will say that a test result points to something, I'll get excited thinking we have a diagnosis, only to be back at square one when they say (after more definitive tests) that it's not. so frustrating.

Jump to this post

It's easy to understand your frustration. Have you had any appointments yet with the Mayo doctors? Just wondering what type of tests they may have scheduled for you. I'm sure they will be able to figure it out. If you don't mind sharing, can you keep us updated?

John

REPLY
gailfaith | @gailfaith | Oct 20, 2017
In reply to @michelewithonel "Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy..." + (show)
@michelewithonel

Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy issues for about 4 years now. My left hand has contractures and muscle wasting and the doctors I have been to in the Detroit, MI area can not figure out what is causing it. So here I am, a patient at the Mayo Clinic in Rochester, MN, Hoping that I find my "Dr. House". It has been a long and tiring journey from doctor to doctor, test after test, being given diagnosis after diagnosis only to be eventually told that no, I really didn't have those issues or diseases.

Jump to this post

@jimhd, gailfaith here. YOU are so right. Not only smart phones do that but so do computers. The only good thing about them is usually they at least catch spelling errors, but it depends on YOU to make sure YOU know what you want to say! I have several friends that not only write emails cryptically, but she doesn't proof what she writes either. So half of her emails are worthless. PLEASE PEOPLE.....PROOF WHAT YOU WRITE BEFORE YOU HIT THE SEND BUTTON !!!!!!!!!!!!!

REPLY
michelewithonel | @michelewithonel | Oct 20, 2017

yes, I have been to the Mayo Clinic once. They did all the same tests that I have had before. I will be going back to have a 3 tesla MRI with flexion of my neck and a lumbar puncture.

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 20, 2017
In reply to @darlia "Hi Michelle, I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY. I am being..." + (show)
@darlia

Hi Michelle,

I also have Peripheral Neuropathy caused by a rare FGFR3 ANTIBODY.
I am being referred to the Mayo I n Rochester also and I live in NE Missouri. Recently I have been having contractions of my right upper arm and hand which usually happens at night when I've been more relaxed. My hand wants to tighten and form like a "claw". It's happening for like 1hr when I get it. Found massage helps for the arm part to calm down but so far the Dr.s haven't told me what it could be! My neurologist who I look to for answers has not had an answer. So let me ask you, which specialists have you seen?
I hope you get some answers too. Many people post on here, so maybe we'll get some help here!
Darlia

Jump to this post

@darlia - oops! Again, I demonstrated the benefit of proofreading. I didn't intend to address you as "Darling". That's what the dumbphone comes up with, not for the first time, I'm sure, when Darlia is entered. Sorry.

Jim

REPLY
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