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#1 | ||
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Legendary
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Hi echoes,
You sure have had a lot going on all these years. If you don't mind my asking... if I remember correctly you were diagnosed with an autoimmune disease as well don't you? I was wondering if that is connected to the small fibre neuropathy or is that a separate condition? |
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"Thanks for this!" says: | echoes long ago (10-22-2022) |
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#2 | |||
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Senior Member
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Quote:
i also have pulmonary , lymph, hepatic, thyroid and skin sarcoidosis. you have a very good memory! Last edited by echoes long ago; 10-23-2022 at 10:48 AM. |
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"Thanks for this!" says: | Lara (10-23-2022) |
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#3 | ||
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Legendary
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echoes,
I meant to reply earlier but I had some medical test things happening myself. I didn't remember the actual name but I most certainly remember the injustice of it all. That's an absolutely terribly long time to have waited for that particular diagnosis. I hope that you are getting some pain relief or other medications specific to the Sarcoidosis. I imagine that would cause so much pain let alone your neuropathy. (You have said that about my memory before and I always laugh. I'm very fortunate that it still works at all.) :/ |
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"Thanks for this!" says: | echoes long ago (10-28-2022) |
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#4 | |||
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Senior Member
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Glenntaj, Glenn i know what the results of my small fiber skin punch biopsy mean: the number of small fiber nerves per millimeter for the epidermal layer and the number of small fiber nerves on the sweat gland. What I cannot find is what those numbers mean as to degree of severity of the small fiber neuropathy. For instance 0.07 sounds severe to me when abnormal starts at less than 2.9, but i have not been able to find a source that delineates that. Are you aware of a source i could use to determine degree of severity of the resultant numbers? or is anything under the abnormal considered severe?
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#5 | ||
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Magnate
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--which were originally set at the 5th and 95th percentiles of a large group of non-neuropathy sufferers of varied ages through the MacArthur protocols at Johns Hopkins (which is basically where skin biopsy for intraepidermal small fiber density was invented) is considered to be evidence of small fiber neuropathy. (You can look at the original papers if you search for "MacArthur small fiber" at PubMed.)
The determination of "mild", "moderate", or "severe", though, usually doesn't involve these numbers, but more the perceived symptomology of the patient, as there is not a direct correlation between the numbers and what the patient is objectively feeling. Nevertheless, you're pretty low on the scale, so you can term it severe neuropathy if you'd like--and certainly your symptom profile would match that |
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"Thanks for this!" says: | echoes long ago (11-10-2022) |
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#6 | |||
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Senior Member
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Thank you for the information Glenn. It is much appreciated....as always!
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