ppanther14
12-18-2008, 10:56 AM
Just wondering does anyone know if this not so wonderful disease is hereditary? The reason I am asking is that my 4 year old has been waking up in the middle of the night sometimes lately complaining that her legs hurt. I am hoping and praying that it is just growing pains, but one never know. I can recall about 6 different times over I would say the last maybe a year now. Anyone have some help for me?
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Gummybarb
12-18-2008, 09:21 PM
My internist told me it is hereditary. My brother also has SFN.
bethvt
12-18-2008, 09:54 PM
I was told it wasn't by my neurologist but my son has some of the same complaints I did when I was younger so I can't help but believe it is.
will54
12-19-2008, 12:13 AM
ppanther14,
As far as I know, I'm the only one in my family to have this stuff. I would hate to think I could pass this on to my son. What a horrible thought, this had not crossed my mind.
As far as I know, I'm the only one in my family to have this stuff. I would hate to think I could pass this on to my son. What a horrible thought, this had not crossed my mind.
Aussie100
12-21-2008, 02:54 AM
Hereditory neuropathies usually present themselves in four different groups, it can be small fibre by itself or motor neuropathy alone, sensory and autonomic neuropathies, sensory & motor together, genetic testing would be helpfull..... But there are plenty of other reasons that are not hereditory that cause small fibre damage, like Diabetes mellitus, Alcoholic neuropathy, Prediabetes, Amyloidosis, AIDS, then then there is small fibre neuropathies with autonomic involvement , Amyloidosis, Porphyria, Paraneoplastic neuropathy, Lmyphoma Thallium, Guillain-Barré syndrome, arsenic, mercury toxicity, Thiamine deficiency, Vincristine (Oncovin, Vincosar PFS) toxicity etc, it all gets pretty complicated like length dependent or non length dependent small fibre neuropathy which makes a neuro [who knows his/her stuff] look at the known possible causes relying on the symptoms displayed, but sometimes even with the best neuro on your side an answer is not always found [ the dreaded idiopathic diagnoses] .
i hope this helps
Aussie :)
i hope this helps
Aussie :)
sitlos1971
12-22-2008, 02:03 AM
I have not been officially diagnosed with SFN (but I'm sure I will be since I've only been to 4 docs so far and it seems you need to go to quite a few before it gets figured out). At any rate, both my Dad and I have similar symptoms and my uncle has just started complaining of them as well. By dad's started 14 years ago, mine started in April of this year and my uncle in the last few months. I can't help but think it's hereditary :(
Aussie100
12-29-2008, 03:45 PM
I have not been officially diagnosed with SFN (but I'm sure I will be since I've only been to 4 docs so far and it seems you need to go to quite a few before it gets figured out). At any rate, both my Dad and I have similar symptoms and my uncle has just started complaining of them as well. By dad's started 14 years ago, mine started in April of this year and my uncle in the last few months. I can't help but think it's hereditary :(
Really only need one neuro that specializes in neuropathy to diagnose properly, one test is only needed as well, which is a skin punch biopsy for small fibre PN, some people think any neuro should know about neuropathy, this is not true, most of them are clueless when it comes to neuropathy, it is a specialized field of neurology and best left to the experts, given your family history of PN, yours very possibly could be hereditory but not all small fibre cases are, there are a ton a reasons and unfortunatly still a lot of unknown reasons.
Aussie :)
Really only need one neuro that specializes in neuropathy to diagnose properly, one test is only needed as well, which is a skin punch biopsy for small fibre PN, some people think any neuro should know about neuropathy, this is not true, most of them are clueless when it comes to neuropathy, it is a specialized field of neurology and best left to the experts, given your family history of PN, yours very possibly could be hereditory but not all small fibre cases are, there are a ton a reasons and unfortunatly still a lot of unknown reasons.
Aussie :)
bethvt
12-30-2008, 12:29 AM
I had a QSART done at the Cleveland Clinic for my diagnosis of SFN. I guess there's only five places in the country that do it so if you are having trouble with your neurologist, ask your GP help you find a specialist.
ppanther14
12-30-2008, 12:32 AM
I had a QSART done at the Cleveland Clinic for my diagnosis of SFN. I guess there's only five places in the country that do it so if you are having trouble with your neurologist, ask your GP help you find a specialist.
I am sorry but what is a QSART is it a test
ppanther14
I am sorry but what is a QSART is it a test
ppanther14
bethvt
12-30-2008, 12:39 AM
Sorry! QSART- Quantitative Sudomotor Axon Reflex Test
Here's a quick link I just googled that can explain better than me! It only took me about 15-20 minutes and I went back to the neuro office and had a diagnosis. Granted this was after multiple MRI's, a lumbar puncture and gallons of bloodwork for anything they could come up with but this part was easy atleast.
http://millercenter.uchicago.edu/learnaboutpn/evaluation/autonomic/qsart.shtml
Here's a quick link I just googled that can explain better than me! It only took me about 15-20 minutes and I went back to the neuro office and had a diagnosis. Granted this was after multiple MRI's, a lumbar puncture and gallons of bloodwork for anything they could come up with but this part was easy atleast.
http://millercenter.uchicago.edu/learnaboutpn/evaluation/autonomic/qsart.shtml
Aussie100
12-30-2008, 01:08 AM
I am sorry but what is a QSART is it a test
ppanther14
Quanitive Sensory testing can detect small fibre neuropathy, its no big deal, they just place electrodes on your body and see how you react to differant sensations [ the patient just pushes a button when they feel the reaction ]
it also is good for testing nerve endings, actually thats how mine small fibre damage was tested, but it isn't always for succesfull for every patient, were as the skin punch biospy is the gold standard for small fibre detection, it is much better as they can actually see in a labatory enviroment how much damage there is to the nerve/s, in Australia we don't have the option of having a skin punch biopsy like our US friends have, so have to rely on the older testing method, quanitive sensory testing which is still good but not always perfect.
Aussie :)
ppanther14
Quanitive Sensory testing can detect small fibre neuropathy, its no big deal, they just place electrodes on your body and see how you react to differant sensations [ the patient just pushes a button when they feel the reaction ]
it also is good for testing nerve endings, actually thats how mine small fibre damage was tested, but it isn't always for succesfull for every patient, were as the skin punch biospy is the gold standard for small fibre detection, it is much better as they can actually see in a labatory enviroment how much damage there is to the nerve/s, in Australia we don't have the option of having a skin punch biopsy like our US friends have, so have to rely on the older testing method, quanitive sensory testing which is still good but not always perfect.
Aussie :)