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Old 10-31-2010, 08:20 PM #1
EE03 EE03 is offline
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Quote:
Originally Posted by lynn01 View Post
Some symtoms such as cramping, and numbness could be large fiber involvement but because none of your test so far has come back positive for nerve damage, I don't know what else to add. For the tempature sensations, I do believe that is caused by a small fiber nueropathy which you said the doctor ruled out by the biopsy.
The biopsy could be normal if its in the early stages of the condition. I was reading someones post on here which discussed that and it does seem reasonable. I know the temperature sensation is consistent with SFN. I don't want to have it, but at the same time, I'd really like to know what I have and if there is something that can be done with it. Hence my frustration.
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Old 10-31-2010, 10:16 PM #2
rose_thorn98 rose_thorn98 is offline
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I don't really have any advise for you, but I just wanted to say sorry that you still don't have a diagnosis. I know how that feels. I hope you get some answers soon. I find I have to also remind myself that there are alot of illnesses and conditions that we just don't know that much about, and at least we are not alone, lots of people are in our boat too. May we all find our answers sooner rather than later.
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Old 10-31-2010, 10:17 PM #3
invisable invisable is offline
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Default Sounds like it to me.......

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Originally Posted by EE03 View Post
The biopsy could be normal if its in the early stages of the condition. I was reading someones post on here which discussed that and it does seem reasonable. I know the temperature sensation is consistent with SFN. I don't want to have it, but at the same time, I'd really like to know what I have and if there is something that can be done with it. Hence my frustration.
I am no expert, in the frustration stage myself.....just got a skin biopsy, waiting for results after one and a half years of symptoms and no answers.

I completely understand your description of sensations, they are hard to describe and everyone feels and describes them differently. I actually described some of my feelings as sparklers too.

I have done a lot of reading on different types of neuropathy, you have all the classic symptoms.........wondering if you may be too early too reveal on tests.......when did your symptoms start?

Are you are any medications to help with pain, etc?

Last edited by invisable; 10-31-2010 at 10:21 PM. Reason: added words
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Old 11-01-2010, 12:42 PM #4
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Originally Posted by invisable View Post
I am no expert, in the frustration stage myself.....just got a skin biopsy, waiting for results after one and a half years of symptoms and no answers.

I completely understand your description of sensations, they are hard to describe and everyone feels and describes them differently. I actually described some of my feelings as sparklers too.

I have done a lot of reading on different types of neuropathy, you have all the classic symptoms.........wondering if you may be too early too reveal on tests.......when did your symptoms start?

Are you are any medications to help with pain, etc?
It depends on what are actually symptoms of PN. Some occured as early as 2005 and others in 2008. I'm on a variety of meds, but not the typical ones used to treat nerve disorders as I can't tolerate those meds.
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