1. < Neuropathy

Small Fiber Neuropathy biopsy test results

Posted by joannemm34293 @joannemm30809, Jul 1, 2022

Last month I had a small fiber neuropathy biopsies of my left leg. Three skin biopsies were taken. One above the outside of my ankle, another near outside of my knee and another at upper outer thigh area.

The ankle and knee area biopsy came back negative but the upper outer thigh area nearer my hip came back positive.

How can I have two negative locations in my left leg for small fiber neuropathy yet the one on the outer side closer to where my thigh joins my hip was positive.?

Can anybody give any insight as to how this can be because I have sharp pains in my feet and pins and needles for 3 years now but the locations near my ankle and my knee were negative but the one nearer my outer thigh near my hip was positive.

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rnlorena | @rnlorena | Jul 5, 2022
In reply to @boltz7555 "@rnlorena I had a lot of those cardiac tests you mention also. It was the tilt..." + (show)
@boltz7555

@rnlorena I had a lot of those cardiac tests you mention also. It was the tilt table/autonomics testing my neurologist did that diagnosed the POTS. All the cardiac testing just concluded “tachycardia”, basically. I hear from so many people that it’s extremely difficult for them to get into Mayo. It was very simple for me. I wonder if it has to do with insurance. I just called, shared with them that I was looking for a second opinion and requested a specific doctor (based on my online research of the providers at Mayo). One thing worth mentioning is that my insurance does not require a referral. I can choose my specialists, as long as they are in network, without a referral. Maybe insurance is the difference? Which Mayo would you look to get into? I live in Phoenix and am very lucky that they’re practically in my backyard.

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Robyn, I would be looking at Jacksonville Mayo. I checked on my insurance and they would cover Mayo. I can go to any Dr. I want. I have been a little upset about Drs. When I first had the funny feeling in my chest I went to the place where I had been before for cardiac. I saw a new Dr. they hired. He sat in a chair and didn"t listen to a thing I said. He had on an Apple Watch and said that it would be good if I had one. I was ticked off to the max when I left there. I found out where my cardiac Dr. was and made an appt. Recently I had a few other things happen with Drs. It is not me. I recently left a Dr. that I really liked. Back in Dec. I was supposed to have a sixth month check up with her. I was looking forward to it because I had some issues. They called me and cancelled the appt the day before and said they weren't sure how long she was going to be out of office. We are talking months. I asked who I would see. They were very unprepared. I told her when I went that I was anemic last year and had to take Optiferrin-C well I had blood work and when I went on line to look at it I saw a lot of reds. I had to call them and ask what the problem was. I have never ever had to do that. Ever. I was upset. So I called them and wanted answers. I get a call back and they said well you are slightly anemic. Didn't say what I should do. I go to the visit and she says I should take the Optiferrin-C three times a week. I mentioned I wanted to go to Mayo and this is what she said. Well she didn't think it was a good idea because of the amount of money that it could take. I am extremely upset about that. I really want to find another Dr. but this time I will have to be more cautious. I had gone to another appt. and asked about my blood work and before I left I was told that the ARNP would have to speak with the Dr. and they would call me. After nearly a week went by I called them. Well we are sorry that we didn't call but we sent your information to one of my Drs and said I needed to call them. I have never had to do that ever. I called them and they never got the paperwork. The nurse made me an appt and I said I would print out my labs and bring them myself. It makes it hard for anyone who has issues to not just deal with the issues they have but that kind of stuff also. I will have a lot of questions about how they run their office for sure.

REPLY
2 replies
rnlorena | @rnlorena | Jul 5, 2022
In reply to @rnlorena "Robyn, I would be looking at Jacksonville Mayo. I checked on my insurance and they would..." + (show)
@rnlorena

Robyn, I would be looking at Jacksonville Mayo. I checked on my insurance and they would cover Mayo. I can go to any Dr. I want. I have been a little upset about Drs. When I first had the funny feeling in my chest I went to the place where I had been before for cardiac. I saw a new Dr. they hired. He sat in a chair and didn"t listen to a thing I said. He had on an Apple Watch and said that it would be good if I had one. I was ticked off to the max when I left there. I found out where my cardiac Dr. was and made an appt. Recently I had a few other things happen with Drs. It is not me. I recently left a Dr. that I really liked. Back in Dec. I was supposed to have a sixth month check up with her. I was looking forward to it because I had some issues. They called me and cancelled the appt the day before and said they weren't sure how long she was going to be out of office. We are talking months. I asked who I would see. They were very unprepared. I told her when I went that I was anemic last year and had to take Optiferrin-C well I had blood work and when I went on line to look at it I saw a lot of reds. I had to call them and ask what the problem was. I have never ever had to do that. Ever. I was upset. So I called them and wanted answers. I get a call back and they said well you are slightly anemic. Didn't say what I should do. I go to the visit and she says I should take the Optiferrin-C three times a week. I mentioned I wanted to go to Mayo and this is what she said. Well she didn't think it was a good idea because of the amount of money that it could take. I am extremely upset about that. I really want to find another Dr. but this time I will have to be more cautious. I had gone to another appt. and asked about my blood work and before I left I was told that the ARNP would have to speak with the Dr. and they would call me. After nearly a week went by I called them. Well we are sorry that we didn't call but we sent your information to one of my Drs and said I needed to call them. I have never had to do that ever. I called them and they never got the paperwork. The nurse made me an appt and I said I would print out my labs and bring them myself. It makes it hard for anyone who has issues to not just deal with the issues they have but that kind of stuff also. I will have a lot of questions about how they run their office for sure.

Jump to this post

Robyn, Sorry for the running off of words. I tried to edit and they said it was too late. I think I might try your approach and see what happens. I really think it might be more important to try to see a cardiologist regarding the heart and maybe the eye thing. Although I am already seeing a neuro-opthalmologist. I thank you for your replies because it sets me thinking about options. I feel for others after reading their stories. It helps to share with other people because you might get something that will be helpful to you.

REPLY
robyn | @boltz7555 | Jul 6, 2022
In reply to @rnlorena "Robyn, I would be looking at Jacksonville Mayo. I checked on my insurance and they would..." + (show)
@rnlorena

Robyn, I would be looking at Jacksonville Mayo. I checked on my insurance and they would cover Mayo. I can go to any Dr. I want. I have been a little upset about Drs. When I first had the funny feeling in my chest I went to the place where I had been before for cardiac. I saw a new Dr. they hired. He sat in a chair and didn"t listen to a thing I said. He had on an Apple Watch and said that it would be good if I had one. I was ticked off to the max when I left there. I found out where my cardiac Dr. was and made an appt. Recently I had a few other things happen with Drs. It is not me. I recently left a Dr. that I really liked. Back in Dec. I was supposed to have a sixth month check up with her. I was looking forward to it because I had some issues. They called me and cancelled the appt the day before and said they weren't sure how long she was going to be out of office. We are talking months. I asked who I would see. They were very unprepared. I told her when I went that I was anemic last year and had to take Optiferrin-C well I had blood work and when I went on line to look at it I saw a lot of reds. I had to call them and ask what the problem was. I have never ever had to do that. Ever. I was upset. So I called them and wanted answers. I get a call back and they said well you are slightly anemic. Didn't say what I should do. I go to the visit and she says I should take the Optiferrin-C three times a week. I mentioned I wanted to go to Mayo and this is what she said. Well she didn't think it was a good idea because of the amount of money that it could take. I am extremely upset about that. I really want to find another Dr. but this time I will have to be more cautious. I had gone to another appt. and asked about my blood work and before I left I was told that the ARNP would have to speak with the Dr. and they would call me. After nearly a week went by I called them. Well we are sorry that we didn't call but we sent your information to one of my Drs and said I needed to call them. I have never had to do that ever. I called them and they never got the paperwork. The nurse made me an appt and I said I would print out my labs and bring them myself. It makes it hard for anyone who has issues to not just deal with the issues they have but that kind of stuff also. I will have a lot of questions about how they run their office for sure.

Jump to this post

@rnlorena I’m sorry to hear about all that trouble you’ve had with getting quality care. You’re right, it makes a person not want to deal with their medical issues because of the trouble finding quality care. I’ve had symptoms of my -now known- conditions for ~25 years. I was often given the catch-all diagnoses and meds thrown my way, I’d end up quitting meds and moving on. The symptoms progressed enough over the last few+ years that I got more assertive about finding good care and answers.
Have you looked at the specialists at Jacksonville Mayo? Maybe research the doctors, read their bios and find one that could be a match for you, then call Mayo for an appointment. Let them know you checked your insurance and the provider you are calling to schedule with is covered. Also let them know you’re ok with being scheduled with the doctor they feel is best suited for you based on your medical records. From my experience, at that point they’ll tell you where to have your records faxed. Once you fax your records, give it about 7-10 days and call back to confirm receipt and make the appointment. In my case, they didn’t want to make the appointment until I sent my records.
I hope you find good, quality care that you deserve. Let me know how it goes.

REPLY
1 reply
rnlorena | @rnlorena | Jul 7, 2022
In reply to @boltz7555 "@rnlorena I’m sorry to hear about all that trouble you’ve had with getting quality care. You’re..." + (show)
@boltz7555

@rnlorena I’m sorry to hear about all that trouble you’ve had with getting quality care. You’re right, it makes a person not want to deal with their medical issues because of the trouble finding quality care. I’ve had symptoms of my -now known- conditions for ~25 years. I was often given the catch-all diagnoses and meds thrown my way, I’d end up quitting meds and moving on. The symptoms progressed enough over the last few+ years that I got more assertive about finding good care and answers.
Have you looked at the specialists at Jacksonville Mayo? Maybe research the doctors, read their bios and find one that could be a match for you, then call Mayo for an appointment. Let them know you checked your insurance and the provider you are calling to schedule with is covered. Also let them know you’re ok with being scheduled with the doctor they feel is best suited for you based on your medical records. From my experience, at that point they’ll tell you where to have your records faxed. Once you fax your records, give it about 7-10 days and call back to confirm receipt and make the appointment. In my case, they didn’t want to make the appointment until I sent my records.
I hope you find good, quality care that you deserve. Let me know how it goes.

Jump to this post

Robyn, Twenty five years is a long time to deal with medical issues. It can become tiring to people when they want to know things. The pill thing is something else. I have had trouble myself dealing with this idiopathic SNF. It's the not know that can hurt you. Too many people just go along with things and I am not that way. Not all Doctors are bad. I have seen some good ones. I am a firm believer that you have to question things but a lot of people don't. I have always advocated for the patient. I have had patients tell me their Drs are God. (I went crazy over that one). They are just people with a degree and they can make mistakes. I have told patients that if they are unhappy with their Dr. find another one. As I said before I love my cardiologist and she did right in giving me metoprolol for my heart rate and she also saved my husbands life. I want to question what else can I expect. Even though we have it I don't like the unknown. If I can be prepared I want to be. I want to see a cardiologist regarding my SNF and my heart. They also have neuro-opthalmologists at Mayo. I see one here and he is really good but I want to see one that may have seen more patients with SNF. The pin pricks in my eyes are scary to me and if I can I would like to know where I stand on that. As of yet I haven't met anybody that has had those. I also saw they generally put the private insurances out that the Dr. carries. I called my primary insurance and they said no problem with me going to Mayo. Thank you so much for your information on making appointments. I would like to see a neurologist at Mayo for a second opinion but I am not sure based on the fact that I am idiopathic and they have already tested me that I can get an appt. I am not giving up and I am gonna go for it. I will definitely let you know how it goes. I appreciate you very much.

REPLY
1 reply
Joanne Campbell | @jkcampbell | Jul 8, 2022
In reply to @rnlorena "Robyn, Twenty five years is a long time to deal with medical issues. It can become..." + (show)
@rnlorena

Robyn, Twenty five years is a long time to deal with medical issues. It can become tiring to people when they want to know things. The pill thing is something else. I have had trouble myself dealing with this idiopathic SNF. It's the not know that can hurt you. Too many people just go along with things and I am not that way. Not all Doctors are bad. I have seen some good ones. I am a firm believer that you have to question things but a lot of people don't. I have always advocated for the patient. I have had patients tell me their Drs are God. (I went crazy over that one). They are just people with a degree and they can make mistakes. I have told patients that if they are unhappy with their Dr. find another one. As I said before I love my cardiologist and she did right in giving me metoprolol for my heart rate and she also saved my husbands life. I want to question what else can I expect. Even though we have it I don't like the unknown. If I can be prepared I want to be. I want to see a cardiologist regarding my SNF and my heart. They also have neuro-opthalmologists at Mayo. I see one here and he is really good but I want to see one that may have seen more patients with SNF. The pin pricks in my eyes are scary to me and if I can I would like to know where I stand on that. As of yet I haven't met anybody that has had those. I also saw they generally put the private insurances out that the Dr. carries. I called my primary insurance and they said no problem with me going to Mayo. Thank you so much for your information on making appointments. I would like to see a neurologist at Mayo for a second opinion but I am not sure based on the fact that I am idiopathic and they have already tested me that I can get an appt. I am not giving up and I am gonna go for it. I will definitely let you know how it goes. I appreciate you very much.

Jump to this post

I saw Dr. Staff at Mayo in Rochester. He is a great neurologist an helped me deal withy local neurologist. He spent an hour with me. First, he explained all the testing I had done at my local neurologist. The test he had done and then he asked me to tell him my total history. I had had a Stem Cell Transplant 8 1/2 years ago at Mayo and my local doctors had tried to blame chemo on my issue. He explain that it is not due to chemo. He believes my back has damage that does to show on an MRI (I had back surgery 3 years ago). He explains why not to have another surgery etc etc. My puzzle isn't solved, but I am in PT and the big thing is he listened.

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1 reply
rnlorena | @rnlorena | Jul 8, 2022
In reply to @jkcampbell "I saw Dr. Staff at Mayo in Rochester. He is a great neurologist an helped me..." + (show)
@jkcampbell

I saw Dr. Staff at Mayo in Rochester. He is a great neurologist an helped me deal withy local neurologist. He spent an hour with me. First, he explained all the testing I had done at my local neurologist. The test he had done and then he asked me to tell him my total history. I had had a Stem Cell Transplant 8 1/2 years ago at Mayo and my local doctors had tried to blame chemo on my issue. He explain that it is not due to chemo. He believes my back has damage that does to show on an MRI (I had back surgery 3 years ago). He explains why not to have another surgery etc etc. My puzzle isn't solved, but I am in PT and the big thing is he listened.

Jump to this post

Joanne, Thank you for your story. I think that is great that you had someone listen to you about something so very important. I am seeing some of the not listening myself. I understand frustration because I have it. I have bulging discs and different things in my back. They found a syrinx on my MRI that was done with contrast. A syrinx is a fluid filled bleb inside your spinal canal. Things like that are not suppose to be there. If it grows in size it can cause issues. The neuro that I saw did MRI but without contrast. The syrinx can go away but mine was small in diameter when it was found. That is one of the things I am going to ask about. Also at C7-T1 I have a small parental disc protrusion cause some right lateral recess stenosis. I have multi-level spondylosis and back issues run in the family. I don't believe what I have is causing the SNF. I am gonna work on an appt to Mayo in Jacksonville. My puzzle is not solved either but I am continuing to work on it. Good luck to you on your puzzle. Hope you get more answers.

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Mentor
Jim, Volunteer Mentor | @jimhd | Jul 9, 2022

@jkcampbell Hi, Joanne. I've had the same test more than once, but my results are the highest at my foot, and somewhat lower as it goes up my leg. I don't feel anything when they put needles in my feet. I don't know why your results were the opposite. I think that it indicates how far the sfpn is progressing. I haven't looked at your history, so I may be asking you about your symptoms unnecessarily, but I am curious where you are in your neuropathy journey.

It would be good to ask your neurologist at your follow up visit what it means to have a response only at the thigh biopsy. I would ask my neurologist that kind of question in the patient portal.

Jim

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Joanne Campbell | @jkcampbell | Jul 9, 2022

The neurologist at Mayo believes that the tests are too sensitive for SFN and that many times it is something else than SFN. With me since my feet are the problem and the thigh is where the positive results are he believes it may stem from my back. PT hopefully will strengthen my core as he does not think another back surgery is the way to go according to my MRI's. A surgery may do more bad than good.

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betty1952 | @betty1952 | Jul 10, 2022

I would like to have my Chronic-pain neuropathy surgeon or to have my spine reevaluated by him or one of his fellow Chronic Pain neuropathy surgeons that are as rare as hen's teeth! He indicated there was one on the east coast and two in the midwest. I pray there are more by now, Oh, please God!
Tim Rollerstrop M.D

Peripheral Nerve Surgery
3035 W Horizon Ridge Pkwy #120
Henderson, NV 89052
(He has a website)
702-666-0463

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issapi04 | @issapi04 | Jan 29 8:36pm

I am so glad I found this forum. I am a 34 male, always healthy and active at the gym. However , back in 2016 I had a brief electric shot like sensation on both cheeks while brushing my teeth, and slowly started to have strange sensations on my face, TMJ and headaches, but it was not until 2019 when I developed a sudden burning pain in both legs, both arms and in both side of the face, I lived a somehow normal with this pain, but in Oct 2023, I developed sudden autonomic symptoms (shortness of breath upon standing and exertion, tachycardia, dizziness, flushing, chest pain and weakness in legs upon standing and walking. My neurologist believe it is SFN with dysautinomia but my most recent skin biopsy came back normal, in fact, the nerve density on my calf has increased compared to my results in 2020. I have a history of exposure to medications that are known for impacting the peripheral nerves, but with two normal skin biopsies, I am so concerned that I might have to continue testing to hopefully get a diagnosis, this is tiring !

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