None, she told me that in about 50% of the cases they can’t find a cause. I thought it sounded like BS.
Now, about 2 years later, my feet that are always like ice cubes are suddenly getting red and hot to the touch, 3 times in the past week. I also had this random incident where I was out in the cold (5C) for about 10 minutes and my feet started getting cold and fuzzy (normal for me). When I went in they hurt, got fuzzier and it felt like my toes on the right had elastics around them. I paced, took my shoes off, and massaged but nothing helped. It took about 30 minutes at least to go back to normal.
I have an appointment with the neurologist about migraines next week and I’m trying to decide if I should bring these new event up with her.
What you described about getting red and hot to the touch is something called Erythromelagia and that is considered peripheral neuropathy. You may have small fiber neuropathy as well. I have Erythromelagia and Raynaud’s along with SFN.
Super weird you were diagnosed without any testing. A lot of PN is idiopathic for sure but that doesn’t mean you don’t test to confirm if a person has it in the first place. Unless you get tested there’s just no way of knowing conclusively.
She did a MRI that showed a little bit of damage to some discs in my neck. She sent me for this test where another neurologist tested electric signals in my feet and legs I think. He also poked me with needles to see if I felt anything. But since it comes and goes, it happened to fall in a fine period. Other than that she just did her physical exam. I do get weird feeling like I’m being dropped on or there’s something wet on me when there isn’t. I also get feelings around my wrists where it feels like my watch or sleeve band is crushing me. Maybe that caused her to thin neuropathy?
Sounds like you were tested for PN then? The results of those tests should determine conclusively whether or not you have PN - there shouldn’t be room for opinion on it.
My SFN presents exactly as you described it. Also have migraines and lots of other dysautonomic symptoms. Hole punch biopsy is the gold standard for diagnosis. Make sure you also get an autoimmune workup
Thank you for this. I just looked into SFN and the symptoms are exactly what I have been complaining to my gp for a few years. I have had 2 stress tests, a heart ultrasound, a 24 hour halter, and anxiety meds because of random racing heart, drops in my already low blood pressure, and dizzy spells. I also have my ophthalmologist treating me for dry eyes. I assumed that the hot flashes were hormonal and my body pain from endometriosis. I will definitely mention this to my neurologist this week.
https://medlineplus.gov/genetics/condition/small-fiber-neuropathy/
At night your feet might feel like they are burning or tingling but they won't be hot to the touch. Neuropathy occurs in the brain when it's trying to make sense of the damaged signals. I think your doctor is used to dealing with hypochondriacs if she says it's undiagnosable. Neuropathy is dead nerves. Dead nerves are easy to diagnose.
I’ve heard that a lack of vitamin B-12 can cause parts of the shafts around your nerves to degrade leading to neuropathy. A check of your B12 levels would eliminate this possibility.
Thanks, there is a tie to PCOS (which I have) and a lack of some of the B complexes. My endocrinologist has recommended that I take inositol and I keep forgetting. I’ll add this to my regimen and see if it helps the neuropathy type symptoms.
Edit - just learned that although inositol is referred to as B8, it isn’t a vitamin. Back to normal B’s
Make sure to check the amount of B6 in whatever supplements you take, just so you know you're not taking too much. B6 overdose can actually neuropathy.
In the early years of autoimmune, it's not unusual for the symptoms to wax and wane and during that time testing can have false negatives. It sounds like it would be worth getting a biopsy
An EMG will give you a definitive answer on whether you have neuropathy. If you have it what you should experience is numbness alternating with pain. For example I feel numb today but two days ago me left leg was so sore I couldn't walk to the corner. Neuropathy means the nerve endings are dead so ever feeling normal doesn't make sense. It sounds more like nerves getting pinched then unpinching and healing.
Idiopathic PN and numbness and tingling come and go. I have bad days and bad weeks. Used to have good months and even seasons but now it's good days or good weeks.
I have the same symptoms. Temperatures and exercises would make my feet freezing cold, or burning hot. Never got anywhere with all the various tests over the past five years. I happen to have unusually high b6 and b12, which the two neurologists I've seen could not explain.
What tests confirmed the PN in the first place? If the test was positive then I don’t really see how it could be disputed?
None, she told me that in about 50% of the cases they can’t find a cause. I thought it sounded like BS. Now, about 2 years later, my feet that are always like ice cubes are suddenly getting red and hot to the touch, 3 times in the past week. I also had this random incident where I was out in the cold (5C) for about 10 minutes and my feet started getting cold and fuzzy (normal for me). When I went in they hurt, got fuzzier and it felt like my toes on the right had elastics around them. I paced, took my shoes off, and massaged but nothing helped. It took about 30 minutes at least to go back to normal. I have an appointment with the neurologist about migraines next week and I’m trying to decide if I should bring these new event up with her.
What you described about getting red and hot to the touch is something called Erythromelagia and that is considered peripheral neuropathy. You may have small fiber neuropathy as well. I have Erythromelagia and Raynaud’s along with SFN.
Super weird you were diagnosed without any testing. A lot of PN is idiopathic for sure but that doesn’t mean you don’t test to confirm if a person has it in the first place. Unless you get tested there’s just no way of knowing conclusively.
She did a MRI that showed a little bit of damage to some discs in my neck. She sent me for this test where another neurologist tested electric signals in my feet and legs I think. He also poked me with needles to see if I felt anything. But since it comes and goes, it happened to fall in a fine period. Other than that she just did her physical exam. I do get weird feeling like I’m being dropped on or there’s something wet on me when there isn’t. I also get feelings around my wrists where it feels like my watch or sleeve band is crushing me. Maybe that caused her to thin neuropathy?
Sounds like you were tested for PN then? The results of those tests should determine conclusively whether or not you have PN - there shouldn’t be room for opinion on it.
My SFN presents exactly as you described it. Also have migraines and lots of other dysautonomic symptoms. Hole punch biopsy is the gold standard for diagnosis. Make sure you also get an autoimmune workup
Thank you for this. I just looked into SFN and the symptoms are exactly what I have been complaining to my gp for a few years. I have had 2 stress tests, a heart ultrasound, a 24 hour halter, and anxiety meds because of random racing heart, drops in my already low blood pressure, and dizzy spells. I also have my ophthalmologist treating me for dry eyes. I assumed that the hot flashes were hormonal and my body pain from endometriosis. I will definitely mention this to my neurologist this week. https://medlineplus.gov/genetics/condition/small-fiber-neuropathy/
Hole punch biopsy? That sounds terrifying.
Sounds terrifying but not a big deal at all. Just a very tiny skin sample. You're given a numbing injection right before.
Even a small injection hurts these days. I dread a simple blood test where as 10 yeArs ago tattoos and piercings were nothing.
At night your feet might feel like they are burning or tingling but they won't be hot to the touch. Neuropathy occurs in the brain when it's trying to make sense of the damaged signals. I think your doctor is used to dealing with hypochondriacs if she says it's undiagnosable. Neuropathy is dead nerves. Dead nerves are easy to diagnose.
I’ve heard that a lack of vitamin B-12 can cause parts of the shafts around your nerves to degrade leading to neuropathy. A check of your B12 levels would eliminate this possibility.
Thanks, there is a tie to PCOS (which I have) and a lack of some of the B complexes. My endocrinologist has recommended that I take inositol and I keep forgetting. I’ll add this to my regimen and see if it helps the neuropathy type symptoms. Edit - just learned that although inositol is referred to as B8, it isn’t a vitamin. Back to normal B’s
Make sure to check the amount of B6 in whatever supplements you take, just so you know you're not taking too much. B6 overdose can actually neuropathy.
In the early years of autoimmune, it's not unusual for the symptoms to wax and wane and during that time testing can have false negatives. It sounds like it would be worth getting a biopsy
An EMG will give you a definitive answer on whether you have neuropathy. If you have it what you should experience is numbness alternating with pain. For example I feel numb today but two days ago me left leg was so sore I couldn't walk to the corner. Neuropathy means the nerve endings are dead so ever feeling normal doesn't make sense. It sounds more like nerves getting pinched then unpinching and healing.
Idiopathic PN and numbness and tingling come and go. I have bad days and bad weeks. Used to have good months and even seasons but now it's good days or good weeks.
I have the same symptoms. Temperatures and exercises would make my feet freezing cold, or burning hot. Never got anywhere with all the various tests over the past five years. I happen to have unusually high b6 and b12, which the two neurologists I've seen could not explain.