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Old 05-30-2011, 08:59 AM   #1
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Autonomic Small Fiber Neuropathy

I was just wondering how many people actually find a primary cause for SFN. My neuro says there is nothing she can do for me and told me to continue seeing pain management doc but I have read that it is a secondary disease and if the primary cause can be found they may be able to reverse the damage. I have recently realized I have had SFN since I was 16, I am now 38 and the symptoms are getting pretty severe. I'm just curious to some of the causes and how many get diagnosed vs remaining idiopathic. Thanks for any responses!

Last edited by h2bh; 05-30-2011 at 09:03 AM. Reason: left something out

 
Old 05-30-2011, 12:34 PM   #2
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Re: Autonomic Small Fiber Neuropathy

Hi H2bh - From what I have read on this board, I would guess that most SFNers never find a cause for their neuropathy. Stats say that 30-40% of people with all types of neuropathy are idiopathic, but I suspect that percent is much higher among those who only have small fiber involvement. I will be anxious to read what others post regarding this topic. Like you, when I was diagnosed with SFN, I then looked back and saw I had had minor symptoms for many years. My doctor and I have explored every possible know cause for my neuropathy and have come up negative on everything. I think some day medical science will find a genetic link for SFN (even though I don't know of anyone in my family that had it). Best to you, Ruby

 
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Old 05-30-2011, 09:55 PM   #3
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Re: Autonomic Small Fiber Neuropathy

Thanks Ruby. I've been told that I am symptomatic of an autoimmune disease but not symptomatic enough to get a diagnosis. I think that might be my cause but there is no way to know for sure at this point.

 
Old 05-31-2011, 11:52 AM   #4
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Re: Autonomic Small Fiber Neuropathy

I have had peripheral neuropathy since 2006 in both legs and feet. I was led to believe that you could have expensive testing done that "may" give you the answer as to what caused it but that even after you found out that in most cases nothing could be done to reverse it. I just use medication to control the pain enough to live with it.

 
Old 05-31-2011, 03:25 PM   #5
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Re: Autonomic Small Fiber Neuropathy

Hi, in the early days of my neuropathy I found it very hard to even find a neuro that knew much about neuropathy at all, whilst they may have been excellent in other fields of neurology, their neuropathy knowledge was just pita-full to say the least, one neuro was even a professor of neurology but was an empty head when it came to diagnosing neuropathy.

After months of my own research and a strong recommendation to a very knowledgeable neuropathy wise neuro, is when everything changed for me, he found the cause/s in the first lot of blood tests [low b12 & prediabetes].

It did take a few years to repair the nerve damage, but i am good these days, so I believe it is essential to find an experienced neuropathy neuro when facing the symptoms of this awful infliction of nerve damage.

I believe there is over 200 known causes of neuropathy, some can be helped yet even with the most extensive work ups idiopathic neuropathy still remains at this time, hope fully that will change in time.

all the best
Aussie

 
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Old 05-31-2011, 05:54 PM   #6
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Re: Autonomic Small Fiber Neuropathy

Thanks for your reply. I've had a lot of blood work done. I was severely low on vitamin D, mildly low on B1, B12 and copper. I have autonomic involvement so the deficiencies may be due to malabsorption from the SFN itself. I have a positive ANA which leads me to believe mine may be caused by an autoimmune disease but I don't know and there are so many. Most people who have posted a known cause has been diabetes related. I've had the fasting test but I've heard of a three hour test that I haven't had. I know my neuro has no knowledge of the disease and neither does my PM doc so forums have been my only hope so I appreciate your response.

 
Old 05-31-2011, 06:16 PM   #7
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Re: Autonomic Small Fiber Neuropathy

Quote:
Originally Posted by ncobjim View Post
I have had peripheral neuropathy since 2006 in both legs and feet. I was led to believe that you could have expensive testing done that "may" give you the answer as to what caused it but that even after you found out that in most cases nothing could be done to reverse it. I just use medication to control the pain enough to live with it.
It does get very expensive and I don't have insurance and I haven't been able to work for 3 years not only from this but other health issues that can't be improved upon either. It just seems like I keep telling myself if I can alleviate one thing life would be so much better. I hate facing the fact that it's just going to get worse. Thanks for your imput.

 
Old 06-01-2011, 05:13 AM   #8
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Re: Autonomic Small Fiber Neuropathy

I have been diagnosed with sfn. They did find an antibody in me that they feel caused the sfn. My neuro said that I could have picked up a virus at some point and didn't even know it that attacked my nervous system. I also could have an autoimmune disease that is unknown since the antibody they found didn't test positive for any of the "known" autoimmune diseases. Either way, he said it is irreversible and that I need to learn to live with it. My meds are gabapentin 3600mg/day and tramadol 50mg/every 4 hrs. I spoke with a dr in CA who I accidently came upon (i live in MO) and he said there are other meds that i could try. I am currently trying to get in to a pain specialist in Chicago. How severe is your pain? Mine started in my toes, but is now in my feet, legs, arms, hands and sometimes I get the sharp stabs and "bite like" feeling all over. I get cramping in my feet and fingers (feels like a really bad charlie horse) and sometimes I feel like someone has take a pair of pliers and jerked out my toenails. Does this sound familiar? I am off work today because I just couldn't tolerate it today and work, I work in a very hot environment. The heat really seems to intensify it, is this true for you? I hope this helps in some way and if I can answer anything else, please feel free to ask.

 
Old 06-01-2011, 10:27 AM   #9
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Re: Autonomic Small Fiber Neuropathy

Quote:
Originally Posted by leighallen View Post
I have been diagnosed with sfn. They did find an antibody in me that they feel caused the sfn. My neuro said that I could have picked up a virus at some point and didn't even know it that attacked my nervous system. I also could have an autoimmune disease that is unknown since the antibody they found didn't test positive for any of the "known" autoimmune diseases. Either way, he said it is irreversible and that I need to learn to live with it. My meds are gabapentin 3600mg/day and tramadol 50mg/every 4 hrs. I spoke with a dr in CA who I accidently came upon (i live in MO) and he said there are other meds that i could try. I am currently trying to get in to a pain specialist in Chicago. How severe is your pain? Mine started in my toes, but is now in my feet, legs, arms, hands and sometimes I get the sharp stabs and "bite like" feeling all over. I get cramping in my feet and fingers (feels like a really bad charlie horse) and sometimes I feel like someone has take a pair of pliers and jerked out my toenails. Does this sound familiar? I am off work today because I just couldn't tolerate it today and work, I work in a very hot environment. The heat really seems to intensify it, is this true for you? I hope this helps in some way and if I can answer anything else, please feel free to ask.
You sound a lot like me...

I've had PN since 08...I've seen 4 different Neuros looking for answers..had many zap tests...more blood tests then I can remember....they took some of my ankle never to do a biopsy and also a spinal tap...all came back w/no answers to why I have PN.

I too take 3600mg of Gab a day but have not seen a Pain doc yet...figure that is last resort for me.

I'm in pain from the time i wake up till I go to bed...

I have a question for you....how do your legs/hands feel cramping? mine are in so much pain as they are I've never felt that before...they either hurt or hurt REALLY bad.

I guess I'm lucky w/work...I'm in an office and can usually make it through my day...

Hope all here have a good day today and we all have a pain free day.
J

 
Old 06-04-2011, 11:25 PM   #10
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Lightbulb Re: Autonomic Small Fiber Neuropathy

I was just diagnosed this year and i also have relized that I have been dealing with this awfull thing since I was 16 im 32 now. I have tried all the meds nothing worked and I was allergic to lyrica and savella . the doc. told me there is nothing more she can do for me! I have my days it really depresses me that I get thoughts of wishing I could fall asleep and never wake up, people tell me their sorry and it could always be worse, I sometimes agree but on the days when my children come up to me and say mom will you come play with us, and i cant even walk @ that moment and the pain hurts all over or they want to sit on my lap and they cant cause im in to much pain, my question is how much worse is it, when all the things you enjoy in life get taken away and their is no cure! sorry dont mean to upset anyone I dont have anyone who truley understands my pain! im going to have my mother take my results to her dr. so he can order her a biopsy cause she has similar symptoms as I do, maybe we can prove it is some jacked up genetic disorder and help them learn more about this stupid stuff!!

 
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Old 06-05-2011, 08:17 AM   #11
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Re: Autonomic Small Fiber Neuropathy

Quote:
Originally Posted by cgten View Post
I was just diagnosed this year and i also have relized that I have been dealing with this awfull thing since I was 16 im 32 now. I have tried all the meds nothing worked and I was allergic to lyrica and savella . the doc. told me there is nothing more she can do for me! I have my days it really depresses me that I get thoughts of wishing I could fall asleep and never wake up, people tell me their sorry and it could always be worse, I sometimes agree but on the days when my children come up to me and say mom will you come play with us, and i cant even walk @ that moment and the pain hurts all over or they want to sit on my lap and they cant cause im in to much pain, my question is how much worse is it, when all the things you enjoy in life get taken away and their is no cure! sorry dont mean to upset anyone I dont have anyone who truley understands my pain! im going to have my mother take my results to her dr. so he can order her a biopsy cause she has similar symptoms as I do, maybe we can prove it is some jacked up genetic disorder and help them learn more about this stupid stuff!!
I completely understand. I feel like I have no quality of life sometimes but I look at my son and know I will endure. Have you tried Neurotin? The generic is Gabapentin. For me it was a life saver but my doc changed me to lyrica. We are still working on dosage issues. I too cannot stand to be touched and if I'm fevered or if a certain nerve is irritated my skin feels like it's being scraped of by the lightest touched. It's crazy. I woke up this morning unable to feel part of my hand. I have several other spots that I haven't been able to feel for years so I'm wondering if I will eventually loose feeling in all of my skin. I'm starting to think this could be a good thing. I would also like to know if anyone feels like antibiotics flares your symptoms. I do.

 
Old 06-06-2011, 08:12 AM   #12
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Re: Autonomic Small Fiber Neuropathy

Quote:
Originally Posted by cgten View Post
I was just diagnosed this year and i also have relized that I have been dealing with this awfull thing since I was 16 im 32 now. I have tried all the meds nothing worked and I was allergic to lyrica and savella . the doc. told me there is nothing more she can do for me! I have my days it really depresses me that I get thoughts of wishing I could fall asleep and never wake up, people tell me their sorry and it could always be worse, I sometimes agree but on the days when my children come up to me and say mom will you come play with us, and i cant even walk @ that moment and the pain hurts all over or they want to sit on my lap and they cant cause im in to much pain, my question is how much worse is it, when all the things you enjoy in life get taken away and their is no cure! sorry dont mean to upset anyone I dont have anyone who truley understands my pain! im going to have my mother take my results to her dr. so he can order her a biopsy cause she has similar symptoms as I do, maybe we can prove it is some jacked up genetic disorder and help them learn more about this stupid stuff!!
If a doctor told me that there was nothing more they could do for me I'd see a different doctor(I've seen 4 neurologists)...

TRY and not let it get to you that much...Its taken me a while but now I do better w/that......KNOW there are people much worse off then we are...believe me it can be VERY hard esp on some days but give it a shot...might help you mentally feel better.....as I tell my friends...I'm in a war w/my own body...it is winning BUT in the long run I'm going to kick its butt

I currently take 1200mgs of Gab x3 daily....helps keep some of the pain down..read. NOT all and pretty sure nothing will do that...but lets me still work and get on w/my day(again some days are VERY trying).

This board is full of people that know what you are going through and are here to help and listen...be open and hope you find something that helps you w/your issues.
J

 
Old 06-06-2011, 05:01 PM   #13
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Re: Autonomic Small Fiber Neuropathy

I wanted to tell you that I would like to chat with you CGTEN, but have been so sick the last couple of days. I started on Cymbalta and I don't know if it is what is making me nauseated or if I have come down with something. Also, doc took away my tramadol to put me on the cymbalta and I am really noticing the difference in pain. Hope to talk to you soon. Take care of you!

 
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Old 06-06-2011, 09:55 PM   #14
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Re: Autonomic Small Fiber Neuropathy

unfournatly i have tried all those crazy meds and thats why doc. said sorry there is nothing more to try. but thank you

 
Old 06-06-2011, 09:57 PM   #15
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Re: Autonomic Small Fiber Neuropathy

i have been hurting bad the past week myself i do pray the med works 4 you hope to talk soon take care and may god bless you

 
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