1. < Neuropathy

New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21, 2022

I've had neuropathy in my feet for a couple of years, and the neurologist I consulted has never tracked down the cause. I didn't worry too much because it was just a numbness in my toes. This summer, though, it spread to my hands, up my arms, into my shoulders and into my legs. The neurologist did a biopsy and says that it gave no clue to the cause. He hasn't recommended any treatment, and my condition is worsening daily. I've contacted one university neuropathy clinic and been told that it will be a couple of weeks before they decide whether the doctors there will see me. I can't seem to get any medical personnel to take me seriously.

Interested in more discussions like this? Go to the Neuropathy Support Group.

tijeras3-ken | @tijeras3 | Sep 6, 2022

rnLorena I wonder why you're posting here since it seems as if you already know what course of action to take.. And I wonder how you could make appointments whenever .. Very, very post happy you seem to be to this indivual..

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1 reply
centre | @centre | Sep 6, 2022
In reply to @johnbishop "Hi @centre, There is a discussion I started in the Aging Well group that might be..." + (show)
@johnbishop

Hi @centre, There is a discussion I started in the Aging Well group that might be helpful. I have balance issues too and I can't walk very far due to back problems.

-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

I took a hard fall last winter going into an farm store because I missed a low entry concrete slab and didn't pick up my foot. I did a header into the glass door and fortunate for me the glass didn't break or crack and I semi caught myself on the way down. I've developed a senior shuffle for the winter time but sometimes I forget to be careful. I do have a cane but I haven't used it for a long time. I bought some trekking poles that help more than the cane. They also help me walk with my body and head more erect. They make walking a little safer for me -- https://www.amazon.com/gp/product/B00WTUVBMA/ref=ppx_yo_dt_b_search_asin_title

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Thanks so much! I just ordered the trek poles- hadn't thought of those, an older lady in the neighborhood uses them, I thought she was training for something 😂

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1 reply
tijeras3-ken | @tijeras3 | Sep 6, 2022

Tom01255 It's because those doctor's do not have all the answer's you seek.. The numbness may be caused by diabates or maybe you had an accident sometime during your life, a fall . I know from my situtaion I've been in several car and small truck wrecks over 80 years of my life. Once I was working on a roof job installing shingles, I steped on the ladder that was leaning on the house and it colasped, I landed on my back without any obvious injuries at the time. Another time when thumbing I caught a ride and I was in for the frightfull ride of my life.. The driver I found out was drunk as hell! After I got in his car he was all over the highway barely missing two semis, ! I was sitting in the back seat terrified and knowing my life might end any minute! After crossing over the bridge spanning this river he passed out. And now the car without a driver leaves the highway at high speed, and heads for the ditch by the road side. Instantly I plop down on the floorboard knowing the worst was yet to come! When the car hits the bank by the road it starts flipping. As the car flips I felt awful pain for both of my arms were breaking. As the car continues to flip I was thrown out and landed on a hill.. Some time later I regain conscious, it was dead of night and I'm sure it was after 12:00 am. When I tried to stand I could not move my left arm, I tried moving my right arm I found out it was broken! and II'm sorry there is to much for me to type at this time, and there seems to be little space left for me..

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 6, 2022
In reply to @rnlorena "I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since..." + (show)
@rnlorena

I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since I posted. I have SNF that is idiopathic and its non-length dependent. I have the pin pricks that are all over including the eyes. I was diagnosed last year with the SNF. I noticed a funny feeling in my chest last year and I thought it could be my palpitations acting up. I never felt that before. I had a holter monitor and it showed my heart rate was up at 183 so I was given Metoprolol. Well in June of this year I was sitting and watching TV and I noticed the funny feeling again and I checked my heart rate and it was only 97. So I went to another cardiology appt. and had a ZIO patch monitor. I really wasn't expecting anything, however, and I was shocked to hear I had the PSVT. I then went the next day to a Cardiologist who is an electrophysiologist and he looked at the ZIO results and told me that my PSVT was normal. I was not expecting that at all. I told him when my heart rate was up that they gave me Metoprolol and he told me that he doesn't like to give pills and if he had seen me originally he wouldn't have given the Metoprolol. As a health care professional I was too shocked to think about any other questions to ask. I went home and got on the computer and I actually read that it can be normal in some people. I know he is a very good Dr. but I wasn't expecting that at all. I told him I had SNF and he said he didn't know what that was. He said he would look it up and if he had another patient he would then be able to speak to it. I have weaned myself off of the Metoprolol because it is not helping me with that. I was also taking Magnesium for the palpitations but I took myself off of that because of other issues with taking it. I tried to get an appt at Mayo Jacksonville with cardiology but all of their cardiologists are full and are not taking anymore patients. I have been checking to see if there are any cardiologists that have treated and/or familiar with small nerve fiber. I know that SNF can affect the autonomic nervous system which includes the heart, your gut, your bladder etc. I have more questions regarding the PSVT. I also called Houston DeBakey Heart and Vascular and Birmingham and no luck. If I were to have sustained PSVT I go to the ER. Mine is short bursts of it. I appreciate any comments on this. I did read on Mayo about the autonomic neuropathy. First came the SNF then came the PSVT.

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Hi @rnlorena, I'm sorry you haven't been able to find any answers. I imagine you have done a lot of searching on PSVT but was wondering if you have seen this article:
-- Paroxysmal Supraventricular Tachycardia - Continuing Education Activity:
https://www.ncbi.nlm.nih.gov/books/NBK507699/
I'm not sure if you have heard about the Mayo Clinic Care Network which might be another resource to help get an appointment and hopefully some answers. Here's a list of members:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

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1 reply
julbpat | @julbpat | Sep 6, 2022
In reply to @rnlorena "I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since..." + (show)
@rnlorena

I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since I posted. I have SNF that is idiopathic and its non-length dependent. I have the pin pricks that are all over including the eyes. I was diagnosed last year with the SNF. I noticed a funny feeling in my chest last year and I thought it could be my palpitations acting up. I never felt that before. I had a holter monitor and it showed my heart rate was up at 183 so I was given Metoprolol. Well in June of this year I was sitting and watching TV and I noticed the funny feeling again and I checked my heart rate and it was only 97. So I went to another cardiology appt. and had a ZIO patch monitor. I really wasn't expecting anything, however, and I was shocked to hear I had the PSVT. I then went the next day to a Cardiologist who is an electrophysiologist and he looked at the ZIO results and told me that my PSVT was normal. I was not expecting that at all. I told him when my heart rate was up that they gave me Metoprolol and he told me that he doesn't like to give pills and if he had seen me originally he wouldn't have given the Metoprolol. As a health care professional I was too shocked to think about any other questions to ask. I went home and got on the computer and I actually read that it can be normal in some people. I know he is a very good Dr. but I wasn't expecting that at all. I told him I had SNF and he said he didn't know what that was. He said he would look it up and if he had another patient he would then be able to speak to it. I have weaned myself off of the Metoprolol because it is not helping me with that. I was also taking Magnesium for the palpitations but I took myself off of that because of other issues with taking it. I tried to get an appt at Mayo Jacksonville with cardiology but all of their cardiologists are full and are not taking anymore patients. I have been checking to see if there are any cardiologists that have treated and/or familiar with small nerve fiber. I know that SNF can affect the autonomic nervous system which includes the heart, your gut, your bladder etc. I have more questions regarding the PSVT. I also called Houston DeBakey Heart and Vascular and Birmingham and no luck. If I were to have sustained PSVT I go to the ER. Mine is short bursts of it. I appreciate any comments on this. I did read on Mayo about the autonomic neuropathy. First came the SNF then came the PSVT.

Jump to this post

I don’t have an answer to your question, but two practitioners have directed me to read about Dysautonomia. You might want to read about that.

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rnlorena | @rnlorena | Sep 6, 2022
In reply to @tijeras3 "rnLorena I wonder why you're posting here since it seems as if you already know what..." + (show)
@tijeras3

rnLorena I wonder why you're posting here since it seems as if you already know what course of action to take.. And I wonder how you could make appointments whenever .. Very, very post happy you seem to be to this indivual..

Jump to this post

@tijeras3 I am not quite sure what is the right action. I am guessing actually. That is why this group is here to help each other out. I am a retired nurse but no one knows everything thing not even me. I am frankly quite flabbergasted since all this started. I am dealing with it the best I can. I am glad there is a Mayo Clinic connect. I understand how frustrating it is for people to have issues and they don't have answers. Because I am experiencing that. But one thing I know for sure is no one can say, "I know how you feel." Because no one can or should say that.

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1 reply
rnlorena | @rnlorena | Sep 6, 2022
In reply to @johnbishop "Hi @rnlorena, I'm sorry you haven't been able to find any answers. I imagine you have..." + (show)
@johnbishop

Hi @rnlorena, I'm sorry you haven't been able to find any answers. I imagine you have done a lot of searching on PSVT but was wondering if you have seen this article:
-- Paroxysmal Supraventricular Tachycardia - Continuing Education Activity:
https://www.ncbi.nlm.nih.gov/books/NBK507699/
I'm not sure if you have heard about the Mayo Clinic Care Network which might be another resource to help get an appointment and hopefully some answers. Here's a list of members:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Jump to this post

@johnbishop Thanks for the link. I did read it. I have had palpitations since I was younger but those were here and there and no big deal. The ones I have now can last for awhile and they come and go like that. I had no symptoms or that I had PSVT but I had a funny feeling in my chest twice. When I had the ZIO patch I did not notice that feeling. I had no other symptoms. I wrote down in the book when I did feel something. I am guessing that the PSVT is related to the SNF. It is funny that it started right after the SNF. @julbpat said I might want to read about Dysautonomia and I have read about it. I don't think I asked this question to the Dr. but I will put it here. Could you actually have things over a period of years that lead up to SNF. I am not talking about diabetes. I have been diagnosed years ago with urinary retention. I now have chronic gastritis and chronic silent reflux. My gastro Dr. said he thinks I have irritable bowel syndrome. I had a colonoscopy two weeks ago and will be in the office for followup in a few weeks. I was anemic last year took iron and now have it again. I am back on iron. I have connected a few dots. You can be anemic and have palpitations. I am not a Dr. but would like answers but also know there may not be any. It is a quest for me like so many others. I want to evaluate the best I can on whom I should go see. I don't want to be in a revolving door of Drs.

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1 reply
julbpat | @julbpat | Sep 6, 2022
In reply to @rnlorena "@johnbishop Thanks for the link. I did read it. I have had palpitations since I was..." + (show)
@rnlorena

@johnbishop Thanks for the link. I did read it. I have had palpitations since I was younger but those were here and there and no big deal. The ones I have now can last for awhile and they come and go like that. I had no symptoms or that I had PSVT but I had a funny feeling in my chest twice. When I had the ZIO patch I did not notice that feeling. I had no other symptoms. I wrote down in the book when I did feel something. I am guessing that the PSVT is related to the SNF. It is funny that it started right after the SNF. @julbpat said I might want to read about Dysautonomia and I have read about it. I don't think I asked this question to the Dr. but I will put it here. Could you actually have things over a period of years that lead up to SNF. I am not talking about diabetes. I have been diagnosed years ago with urinary retention. I now have chronic gastritis and chronic silent reflux. My gastro Dr. said he thinks I have irritable bowel syndrome. I had a colonoscopy two weeks ago and will be in the office for followup in a few weeks. I was anemic last year took iron and now have it again. I am back on iron. I have connected a few dots. You can be anemic and have palpitations. I am not a Dr. but would like answers but also know there may not be any. It is a quest for me like so many others. I want to evaluate the best I can on whom I should go see. I don't want to be in a revolving door of Drs.

Jump to this post

I like your comment about connecting the dots. It's so true. I am in that process right now. My sister, who is two years older, has the same issues that I do, although mine seem more debilitating. For that reason, I assume my length dependent SFN is hereditary, as my Dad and Granddad have many of the same issues - again, not as severe as mine. I see each specialist for each problem (gastro, pain doctor), and I now have the SFN diagnosis to share with them. I accept that there is no doctor here who can handle all of my issues. However, my neurologist did order a consult with UAB. I was given an appointment last May, for this December! Seven months of waiting! UAB suggested that I call frequently for cancellations. That trick finally worked, and I am going this week. So a four month wait, instead of seven. Seems ridiculous. But anyway, instead of self-referral, have one of your doctors do the referral. That seems to work better.
There is a SFN clinic at UAB, so hopefully this neurologist can answer my questions, and help "connect the dots" a little better. Then I can share his information with my doctors here.
There is also a Dysautonomia Clinic in Birmingham, which is able to all the testing for Dysautonomia (tilt table, sweat test). With a doctor's referral (sent twice) and a phone message from me, there has been no response. I'm really not as interested in that diagnosis, because I don't see how it will change my treatment, so I haven't pursued it any more.
I'm using Birmingham because it's a less then 2 hour drive from me.

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2 replies
rnlorena | @rnlorena | Sep 6, 2022
In reply to @julbpat "I like your comment about connecting the dots. It's so true. I am in that process..." + (show)
@julbpat

I like your comment about connecting the dots. It's so true. I am in that process right now. My sister, who is two years older, has the same issues that I do, although mine seem more debilitating. For that reason, I assume my length dependent SFN is hereditary, as my Dad and Granddad have many of the same issues - again, not as severe as mine. I see each specialist for each problem (gastro, pain doctor), and I now have the SFN diagnosis to share with them. I accept that there is no doctor here who can handle all of my issues. However, my neurologist did order a consult with UAB. I was given an appointment last May, for this December! Seven months of waiting! UAB suggested that I call frequently for cancellations. That trick finally worked, and I am going this week. So a four month wait, instead of seven. Seems ridiculous. But anyway, instead of self-referral, have one of your doctors do the referral. That seems to work better.
There is a SFN clinic at UAB, so hopefully this neurologist can answer my questions, and help "connect the dots" a little better. Then I can share his information with my doctors here.
There is also a Dysautonomia Clinic in Birmingham, which is able to all the testing for Dysautonomia (tilt table, sweat test). With a doctor's referral (sent twice) and a phone message from me, there has been no response. I'm really not as interested in that diagnosis, because I don't see how it will change my treatment, so I haven't pursued it any more.
I'm using Birmingham because it's a less then 2 hour drive from me.

Jump to this post

@julbpat. I don't have anyone in my family that has had any of what I have. Not even my grandparents. This came out of the blue. I woke up with it which my neurologist said is rare. I have done a lot of reading on Mayo. Just an FYI to anyone John Hopkins has a library with videos about peripheral neuropathy. They have people who have put their stories on the website also. Birmingham is a few hours away from me. Before I go anywhere I will be making notes to ask the Dr. I wasn't really prepared when I went to the cardiologist/electrophysiologist. I do hope you get some answers in Birmingham. I may get another appt. to my neurologist and get him to do a referral. I have some more questions that he may be able to answer.

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1 reply
nitsirk | @nitsirk | Sep 7, 2022

Hi, I too have an idiopathic neuropathy. Correct me if Im wrong but is this a purely sensory neuropathy? Ie you don’t get any weakness, or organ issues, more pain, crawling, burning, numb patches etc etc? Thats what I get anyway. I have Wartenbergs Migratory Sensory Neuropathy. I got positive tinels sign - so do an inner wrist reflex test and feel an electric shock like sensation. I also have irregular nerve conductivity as tested for by an electromyogram. Let me know if its the same sort of thing or not before I go off on a big speil! They don’t like diagnosing this if it is, because its what left when no one knows whats the issue.

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