What sort of diagnosis have you already received? Was it as a result of an EMG? Is it that word "idiopathic" that has you asking for more? It was for me, too, way back when I received my diagnosis. At the time, all my neurologist was able to say was "idiopathic polyneuropathy."
Like most of hit with the word "idiopathic," we want to know the cause––even though we're given to understand that "idiopathic" means the cause is unknown and likely to remain so. Since getting my diagnosis, I've learned a bit more about my disease; it's idiopathic large-fiber, predominantly sensory (with a touch of the autonomic) polyneuropathy.
That helps me manage my neuropathy going forward, but as for looking backward and knowing its cause? I've learned to accept that I'll likely never know.
I wish you success in solving the mystery of your own personal neuropathy as may be possible!
Hello @agiordano, I would like to add my welcome along with Ray @ray666 and others. I have idiopathic small fiber peripheral neuropathy. My Mayo neurologist thought it could possibly be hereditary but pretty hard to tell. You might find this webinar from the Foundation for Peripheral Neuropathy interesting if not helpful.
Hello @agiordano, I would like to add my welcome along with Ray @ray666 and others. I have idiopathic small fiber peripheral neuropathy. My Mayo neurologist thought it could possibly be hereditary but pretty hard to tell. You might find this webinar from the Foundation for Peripheral Neuropathy interesting if not helpful.
What sort of diagnosis have you already received? Was it as a result of an EMG? Is it that word "idiopathic" that has you asking for more? It was for me, too, way back when I received my diagnosis. At the time, all my neurologist was able to say was "idiopathic polyneuropathy."
Like most of hit with the word "idiopathic," we want to know the cause––even though we're given to understand that "idiopathic" means the cause is unknown and likely to remain so. Since getting my diagnosis, I've learned a bit more about my disease; it's idiopathic large-fiber, predominantly sensory (with a touch of the autonomic) polyneuropathy.
That helps me manage my neuropathy going forward, but as for looking backward and knowing its cause? I've learned to accept that I'll likely never know.
I wish you success in solving the mystery of your own personal neuropathy as may be possible!
Yes had EMG from two different neurologist. only told idiopathic possibly hereiditary no mention of small or large fiber or what ever other varitions there are. I want to know whats being damaged so I can concentrate my effects in finding relief
@agiordano
What are your current symptoms? Are you being treated at all?
I also have idiopathic small fiber neuropathy (SFN). Did you have a skin punch biopsy for SFN? The typical causes are diabetes, vitamin B12 deficiency, vitamin B toxicities, drinking alcohol, toxin exposure, etc. I am not diabetic and don’t regularly drink alcohol and do not have vitamin deficiencies or toxicities. Did you have extensive neuropathy bloodwork panel?
Have you had an ankle brachial index test? Do you have any neck/back pain and have you had MRIs of your brain/spine?
Yes had EMG from two different neurologist. only told idiopathic possibly hereiditary no mention of small or large fiber or what ever other varitions there are. I want to know whats being damaged so I can concentrate my effects in finding relief
You and I are trodding the same path. I had to go slow and wait while I catalogued my symptoms (chiefly, poor balance) before I was able to ask my neurologist flat out "Is mine large-fiber?" (To which, he answered "Yes.") Knowing that has allowed me to narrow my investigation of things I might do to better my situation.
Then, a year ago, I came down with a sepsis infection, which came along with its own set of symtoms––all similar to PN––mucking up my investigation royally. Finally, those sepsis symptoms hvae faded leaving me with only my large-fiber PN symptoms to deal with.
My neurologist gave me about 30 different blood tests and determined that I have markers for Lyme disease from a childhood event. As a child I lived in the woods in Virginia. She could not honestly state that Lyme disease was the cause, but it could have been.
I find quite a few posts on the internet that Lyme disease could be an issue.
All other blood tests were fine. So, she defined me as idiopathic.
Had neuropathy for about 5 years and balance is my main issue.
My neurologist gave me about 30 different blood tests and determined that I have markers for Lyme disease from a childhood event. As a child I lived in the woods in Virginia. She could not honestly state that Lyme disease was the cause, but it could have been.
I find quite a few posts on the internet that Lyme disease could be an issue.
All other blood tests were fine. So, she defined me as idiopathic.
Had neuropathy for about 5 years and balance is my main issue.
Hi, @wburgb1ll . Like you, I had Lyme's about twelve years ago. I had excruciating pain until the antibiotics kicked in. I fell about nine years ago and injured my lower back and buttocks. Had it under control with meds and SCS until 2021 when all the symptoms gradually returned. More meds, treatments. EMG suggested Neuropathy(of course). I have many symptoms that don't jive with neuropathy. Lyme test is positive but not quite enough bands on Western blot to confirm long-term Lyme's. Wondering if all this could, indeed, be aftereffects of chronic Lyme's?
What symptoms are you experiencing? Thanks. Be well.
Most of my symptoms indicate idiopathic peripheral neuropathy. My major issue is balance and some loss of muscle mass. Some pain but not totally localized. Most pain in hands, but it moves around.
I also have neuralgia which is often from Lyme disease, but not constant pain.
I only have two bands indicating PN from Western blot. Have different opinions from Drs. on Lyme being the contributor.
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Hello, agiordano (@agiordano)
And welcome!
What sort of diagnosis have you already received? Was it as a result of an EMG? Is it that word "idiopathic" that has you asking for more? It was for me, too, way back when I received my diagnosis. At the time, all my neurologist was able to say was "idiopathic polyneuropathy."
Like most of hit with the word "idiopathic," we want to know the cause––even though we're given to understand that "idiopathic" means the cause is unknown and likely to remain so. Since getting my diagnosis, I've learned a bit more about my disease; it's idiopathic large-fiber, predominantly sensory (with a touch of the autonomic) polyneuropathy.
That helps me manage my neuropathy going forward, but as for looking backward and knowing its cause? I've learned to accept that I'll likely never know.
I wish you success in solving the mystery of your own personal neuropathy as may be possible!
Cheers!
Ray (@ray666)
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2 ReactionsHello @agiordano, I would like to add my welcome along with Ray @ray666 and others. I have idiopathic small fiber peripheral neuropathy. My Mayo neurologist thought it could possibly be hereditary but pretty hard to tell. You might find this webinar from the Foundation for Peripheral Neuropathy interesting if not helpful.
-- Idiopathic Neuropathy with Norman Latov, MD, PhD
https://www.foundationforpn.org/events/idiopathic-neuropathy-with-norman-latov-md-phd/
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1 ReactionI have book marked the site and will go thru it thank you
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1 ReactionYes had EMG from two different neurologist. only told idiopathic possibly hereiditary no mention of small or large fiber or what ever other varitions there are. I want to know whats being damaged so I can concentrate my effects in finding relief
-
Like -
Helpful -
Hug
2 Reactions@agiordano
What are your current symptoms? Are you being treated at all?
I also have idiopathic small fiber neuropathy (SFN). Did you have a skin punch biopsy for SFN? The typical causes are diabetes, vitamin B12 deficiency, vitamin B toxicities, drinking alcohol, toxin exposure, etc. I am not diabetic and don’t regularly drink alcohol and do not have vitamin deficiencies or toxicities. Did you have extensive neuropathy bloodwork panel?
Have you had an ankle brachial index test? Do you have any neck/back pain and have you had MRIs of your brain/spine?
-
Like -
Helpful -
Hug
1 ReactionYou and I are trodding the same path. I had to go slow and wait while I catalogued my symptoms (chiefly, poor balance) before I was able to ask my neurologist flat out "Is mine large-fiber?" (To which, he answered "Yes.") Knowing that has allowed me to narrow my investigation of things I might do to better my situation.
Then, a year ago, I came down with a sepsis infection, which came along with its own set of symtoms––all similar to PN––mucking up my investigation royally. Finally, those sepsis symptoms hvae faded leaving me with only my large-fiber PN symptoms to deal with.
Ray (@ray666)
-
Like -
Helpful -
Hug
3 ReactionsMy neurologist gave me about 30 different blood tests and determined that I have markers for Lyme disease from a childhood event. As a child I lived in the woods in Virginia. She could not honestly state that Lyme disease was the cause, but it could have been.
I find quite a few posts on the internet that Lyme disease could be an issue.
All other blood tests were fine. So, she defined me as idiopathic.
Had neuropathy for about 5 years and balance is my main issue.
Bill
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Like -
Helpful -
Hug
1 ReactionHi, @wburgb1ll . Like you, I had Lyme's about twelve years ago. I had excruciating pain until the antibiotics kicked in. I fell about nine years ago and injured my lower back and buttocks. Had it under control with meds and SCS until 2021 when all the symptoms gradually returned. More meds, treatments. EMG suggested Neuropathy(of course). I have many symptoms that don't jive with neuropathy. Lyme test is positive but not quite enough bands on Western blot to confirm long-term Lyme's. Wondering if all this could, indeed, be aftereffects of chronic Lyme's?
What symptoms are you experiencing? Thanks. Be well.
-
Like -
Helpful -
Hug
1 ReactionMost of my symptoms indicate idiopathic peripheral neuropathy. My major issue is balance and some loss of muscle mass. Some pain but not totally localized. Most pain in hands, but it moves around.
I also have neuralgia which is often from Lyme disease, but not constant pain.
I only have two bands indicating PN from Western blot. Have different opinions from Drs. on Lyme being the contributor.
My Lyme disease was 50 years ago.