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.

allisonsnow | @allisonsnow | Jul 25, 2018
In reply to @photokat "I’m so glad I found your group several months ago, browsed a bit & learned so..." + (show)
@photokat

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.

Jump to this post

welcome to the discussion @photokat I have neuropathy that developed from chemo. It subsided some when the chemo stopped but is now again getting worse in both feet and ankles and minimal in both hands. I am Doctoring at Mayo Rochester presently. I have yet to have a Dr. address my neuropathy. My oncologist has said in no uncertain words he is an oncologist and doesn't deal with other issues, not even so far as a referral or a seem to care attitude. But I have to say a good oncologist. I have finally decided something has to be addressed and since I am seeing him (and my pulmonologist ) I am going to be a bit more forceful in my need of answers. Though the more I have read here it seems that there are no answers. I am more concerned now because I have started shaking and my hands will just jerk while typing or writing etc.. Husband will be home for lunch better get it made more later

Allison

REPLY
barbarn | @barbarn | Jul 25, 2018
In reply to @photokat "I’m so glad I found your group several months ago, browsed a bit & learned so..." + (show)
@photokat

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.

Jump to this post

@photokat - your post made tears come to my eyes - there is so much medical knowledge left out there to be learned. I admire your persistence, acknowledge your mental fatigue... One thing I have learned is that we have to be our own advocate. Good luck to you, and keep on trying! You, and your doctors, will find the answer. Are you close enough to get to a Mayo clinic, or the Cleveland clinic?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 25, 2018
In reply to @photokat "I’m so glad I found your group several months ago, browsed a bit & learned so..." + (show)
@photokat

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.

Jump to this post

@allisonsnow Hi Allison:

I am sure that the shaking and jerking of your hands must be frustrating to you. I was just wondering if you have considered contacting the Neurology Dept at Mayo yourself and asking if they have someone you could consult with?

It might be worth a phone call.

Teresa

REPLY
allisonsnow | @allisonsnow | Jul 25, 2018
In reply to @photokat "I’m so glad I found your group several months ago, browsed a bit & learned so..." + (show)
@photokat

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.

Jump to this post

I can relate to the mentally tired statement. Many times it can be to many Dr.s but still to little information. and when your Dr.s are in the same system they seem to regurgitate each others results instead of giving you a fresh new perspective. They don't have to repeat test just maybe look at them with fresh eyes and pay attention even if the symptoms fall outside THEIR speciality. The big benefit of the big clinic is supposed to be we have a whole team of Dr.s to work on our case and new Dr. can easily be pulled in. My neuropathy is the frozen toes tingling/numbness and pain also have terrible painful cramping of my toes and arches don't know if this is part of the neuropathy or something else to add to the mix. I can imagine you feel completely worn out. People act like "lucky you" no work but it has depressed me especially in the beginning working is a huge part of your social interaction so when you lose that you lose a lot.
I can suggest staying in contact with you work friends, if you not up to having them over for coffee and a gab session meet somewhere. I meet friends twice a month for lunch/coffee and met a whole bunch of supportive new friends thru a weekly bible study program.
I also look at (almost) every day as a gift. I have seen two grandsons born that I was not supposed to be alive for I get depressed some days it is hard not to when my future is so questionable......and right about then someone would chime in with "I could get hit by a bus tomorrow" which is so far from what some of us face every day grrrrr drives me nuts !!!!!LOL
Keep on expecting more from your Dr. and keep asking ?'s They are working for you! I think we forget that sometimes.
I hope that is not the last you will write

Allison

REPLY
allisonsnow | @allisonsnow | Jul 25, 2018
In reply to @photokat "I’m so glad I found your group several months ago, browsed a bit & learned so..." + (show)
@photokat

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.

Jump to this post

will be there next week so planned on it. I am usually much more pro-active than this. Have had a lot going on and we always go to bottom of list...pertaining to another post you made concerning chronic fatigue, which I have also, my pulmonologist of all people addressed It with a Ritulin RX ,after a couple of sleep studies of course and a sleep dr. trying to convince me I had sleep apnea which I don't

REPLY
mattie | @mattie | Jul 27, 2018

I guess I have a sort of neuropathy? I drop things...dont even feel the in my fingers at times, esp food. My hands tingle when I wake uip, ...is tshat it?

REPLY
1 reply
venki | @venki | Jul 28, 2018
In reply to @mattie "I guess I have a sort of neuropathy? I drop things...dont even feel the in my..." + (show)
@mattie

I guess I have a sort of neuropathy? I drop things...dont even feel the in my fingers at times, esp food. My hands tingle when I wake uip, ...is tshat it?

Jump to this post

Not having proper conrol is due to the signal disruption from brain. Im also having the same problem. I have tremors in both hands. I have Ulnar Neuropathy. & Brain shrinkage. Consult a neurologist, take MRI, get medicines for tremors. Otherwise It may be lead to further complications like falling, kicking in some objects etc.T.C. Your age?

REPLY
mattie | @mattie | Jul 28, 2018

am 75. have that,,,,'s neuroma really bad right hand . big toe on right foot sometimes 'drops' andi I trip/////

REPLY
allisonsnow | @allisonsnow | Jul 28, 2018

One thing I have wondered is how much my low oxygen levels may have to do with my neuropathy ...that it may be a circulation problem as much as a nerve problem. Anyone have any thoughts on that? Oh yeah I am on 3 liters O2 24/7

REPLY
3 replies
venki | @venki | Jul 28, 2018
In reply to @allisonsnow "One thing I have wondered is how much my low oxygen levels may have to do..." + (show)
@allisonsnow

One thing I have wondered is how much my low oxygen levels may have to do with my neuropathy ...that it may be a circulation problem as much as a nerve problem. Anyone have any thoughts on that? Oh yeah I am on 3 liters O2 24/7

Jump to this post

Neuropathy can be detected by way of nerve conduction test & Colour Doppler tests etc.whether peripheral or some other but the oxygen level can damage only brain as far as I know but still many tests have to be taken to ensure.

REPLY
View MoreView Less
Please sign in or register to post a reply.