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10-01-2015, 07:23 PM | #31 | ||
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Hi Marianolp - I was diagnosed with NLD idiopathic SFN by an abnormal QSART test (sweat was abnormal at thigh only (not ankle or arm). I also had a skin biopsy which revealed significantly reduced SGNFD at the thigh and not the ankle (both which would support NLD). The idiopathic has come from the ruling out of all causes my docs have looked into. Also my symptoms tend to be in legs, trunk, arms and not the feet as much (main symptoms in the trunk) which also suggest NLD. I'm curious my symptoms started at 18 also and now I am 22....when you say the symptoms became worse since a year do you mean that in the past year they have gotten worse? What is GTT? Your EMG should be normal if you have pure small fiber neuropathy |
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"Thanks for this!" says: | Marianolp (10-04-2015) |
10-01-2015, 09:12 PM | #32 | |||
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10-02-2015, 11:00 PM | #33 | |||
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10-03-2015, 09:42 PM | #34 | ||
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Interestingly, just this week a stool sample came back as containing higher than "healthy" klebsiella bacteria. This was ordered because of the terrible gastrointestinal problems that have been worse in the last couple months than usual "bad." My gastrointestinal problems started at the same time as the neuropathic problems four years ago. The gastroenterologist has suggested I start taking a probiotic, but for now not much else. I guess it's a fine line between normal gut bacteria and abnormal? I find it curious why the lab would report it as a finding if it was completely normal. Thanks for any advice! |
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10-03-2015, 11:05 PM | #35 | |||
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10-04-2015, 07:02 PM | #36 | ||
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Did you also had Coldness in the body sometimes or another whatsoever health problem? |
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10-04-2015, 09:07 PM | #37 | ||
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So let me make sure I understand correctly - you had on and off pain until november of last year and since then pain all over? When you were 18 did you have any testing/diagnosis? When did you have your QST and what did is show? Temperature seems to be a big factor for a lot of people here - for me different temperatures trigger different symptoms. So you had a skin biopsy or did not? I do tend to be very cold very easily not sure if that was what you were asking. Until 19 I had no health problems then the on and off neuropathy symptoms started and from there I have had autonomic heart involvement. You said doctors dont care about skin biopsies where you are from...may I ask where this is? |
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10-04-2015, 11:26 PM | #38 | ||
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I mean with coldness , but maybe have nothing to do or associated with this, but for some reason my feets and parts of the legs (maybe hands) tend to have sensitive to the cold and reamins cold for long time (even when its not much) and it sucks too but I never had a diagnosis for that. (is not Raynaud) You were talking about cold in general body? .. Im from South America, you are North American? i also had for years alot of tongue pain for biting. There is alot of crap of psychiatrists than pretend i take his meddications because the pain is psychosomatic . diagnosed with no reason.. and i tried his craps and never work, i dont trust anymore in those "doctors" |
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10-05-2015, 09:37 AM | #39 | ||
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It sounds like QST testing also looks at small fiber nerves just for temperature sensation instead of sweat production (so different type of small fiber nerve but all small fiber). The QSART looks at autonomic nerves. I haven’t had any experience with the QST testing but I’m sure it is a legitimate test. Have you asked about a skin biopsy from your doctor? If so I would make sure they look at both ENFD (epidermal nerve fiber density) and SGNFD (sweat gland nerve fiber density). I do tend to have sensitivity to the cold (my skin will sting when I shiver). Not sure about the remaining cold longer though – this may be circulation related? Yes I am from North America. So the doctors are telling you your pain is psychosomatic?! Don’t listen to them be your own advocate. Maybe try a new doctor? It is not very common for me to find other young people with similar problems so I always try to find the similarities and differences in symptoms. My main symptom is sensitivity of skin over my back and mid section (one of the reasons mine is labeled as non-length dependent). I have ready quite a few younger people who have milder symptoms for about 4-6 years and then have a sudden increase which makes me nervous as my symptoms first began about 4 years ago so I always wonder if my sudden increase in symptoms is this same thing and if it is here to stay (although I know it is different for every person but I feel like young people’s symptoms tend to mimic eachother more so) Anyone else have advice for someone dealing with a doctor who has said symptoms are psycosomatic? I don't have experience with this.... |
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10-05-2015, 11:25 AM | #40 | ||
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Is a minority who said iit is psychosomatic, mostly dont go with that , except that they are psychiatrists (wich suxs imo)...also I have been in several psychiatric treatments,because the anxiety consequences (insomnia, etc) of these awful odd symptoms caused me , but I saw no improvement, even in many months of the "treatment" my symptoms appeared. And no ,i didnt had a biopsy, im seeing a really good neurologist, if he didnt order for that's because it is not necessary, i guess. I will be tested for Faby disease also. I have three ideas of my own to try something but .. *It is something related with poor body posture * It is something related with bad mental health * It is something related with bad nutrition these are just vague theories..but i will look to do change in these to see if something happens.. Do you think posture of nutrition can be related with this?? Did you have bad posture often or are you alot of time in front of pc? I aslo had read (in other pages) about lupus, lyme, fibro, fabry, candida, shingles (but I guess this if none of these) Did you received medication for the syntoms? |
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