HopeSprings Posted March 20, 2012 Report Share Posted March 20, 2012 I had a skin biopsy in August for small fiber neuropathy - results positive. I later found out that only sensory nerves were looked at, but that it's possible for autonomic nerves to be looked at too. So Dr. #2 does a second biopsy in February and the sample in sent to lab #2 which has the technology to look at both. Dr. #2 calls me today - everything was NORMAL - both sensory and autonomic nerves. WHAT? The first lab reported significantly low nerve fiber density - the second says everything is perfectly normal? I know my nerves didn't grow back in 6 months. I assumed lab #2 would confirm the sensory findings- just wanted to see if there was also autonomic nerve involvement. I am totally confused - SFN very nicely explains the crushing leg pain and burning feet and I figured if sensory nerves were involved, there was a good chance autonomic ones were affected too, which might nicely explain the POTS.Most of the testing I have had done since the first biopsy has involved looking for diseases that cause neuropathy (including the dreaded lip biopsy, from which I am still numb)... because I supposedly have neuropathy. My whole investigation for the past 6 months has been based on that first pathology report! Dr. #2 told me not to dismiss the first test (good lab, symptoms fit etc.), but this is hard to ignore... I'm thinking it's more likely that lab#1 miscounted (undercounted) the number of nerves than that lab 2 counted nerves that weren't there. I know in the end none of this may affect the outcome (finding the cause, getting treated), but I found a certain PEACE in having a piece of the puzzle and having tangible results that explain some of what I feel everyday. I just had to dig deeper, didn't I?I feel like the results cancel eachother out and the only thing I can think to do is go back to Dr.#1, be re-tested and let test #3 be the tie breaker. I feel like as hard as I try I keep hitting road blocks. I know I'm not alone in that.Can anyone think of anything that might explain what may have happened here? Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2012 Report Share Posted March 20, 2012 Sorry, Naomi - it's so difficult to deal. I can't possibly explain it. I'm just as confused as you are. Maybe see if there were any slides or pictures taken of the fibers and have them send them to another lab for re-evaluation. I don't know - just sort of grasping at straws for you. I know, I was so certain I had SFN, but my test were negative too and I do have some sort of neuropathy and couldn't feel pin sticks all over my toes and feet. But, now that I've been off of glutten for a pretty long while - all my feeling is coming back - I also think the tight compression of the hose - was hurting the nerves in my feet. I know one thing suggested for SFN is alpa lipoic acid. Have you tried that?Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 20, 2012 Author Report Share Posted March 20, 2012 Thanks Issie. I'm grasping at straws too. I'm considering calling the first lab and getting their opinion - maybe they can re-check that first sample. That would be great if both could be sent to another lab, but so few do this testing. Haven't tried the ALA, but it was on my list of things to try. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 20, 2012 Report Share Posted March 20, 2012 When I had the biopsy for small fiber neuropathy, it came back as "normal" but the neuro at Mayo said that he thinks that our neuropathy is "patchy" so that if they took a biopsy sample from an "ok" section it would show normal but that didn't mean I didn't have neuropathy in other portions. Also, my autonomic neuropathy was diagnosed, both at CC and Mayo, by the results of my autonomic reflex screens (timed breathing, val salve, Qsart, etc) but not by biopsy.So sorry to hear about your frustrating results!!! I totally hear you on having a sense of "peace" about knowing (or thinking you know) FINALLY what is going on with you. GIANT HUGS!!! Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2012 Report Share Posted March 20, 2012 Thanks for the explanation Chaos, neuropathies run in my family and I was so sure that would be an issue with me. But, things have improved with the diet change. Not 100%, but some better. So hoping that it will continue that way.Issie Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 20, 2012 Report Share Posted March 20, 2012 I think Chaos makes a really good point about the patchy neuropathy--I have heard this many times too. It could at least explain things in this case I have become a little disheartened with medical tests. Although we would all like to believe that there is someone in the lab taking great time and detail and pouring over our test results, the truth is that this is just not the case, and mistakes are made ALL the time. I see it literally dozens of times every day at work. Patients come in and get lab work or imaging studies, and things--BIG things-- are missed. Patients often receive two different diagnoses depending on which hospital they go to, or which doctor they see. It is unfortunate, but it is reality. We are human and humans make mistakes. It just stinks when those mistakes end up causing us a lot of frustration/ torment/ suffering. I dont know if this is what happened in your case or not, but I do feel for you. Sorry you have to go through this and feel like you are starting from scratch all over again. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 20, 2012 Author Report Share Posted March 20, 2012 Chaos - thank you for that explanation! It's true that the 2nd biopsies were taken from a different spot (pretty close though) - but maybe that will make a difference. If you were positive on all those tests, but negative on the biopsy then maybe the biopsy results can't be relied on. My valsalva test was abnormal too and the Dr. said this points to autonomic neuropathy. "Patchy" really could explain what happened here.Rissy - thanks for your reply. I think part of the reason tests are so important to me is because I spent so many years in really bad shape with Dr. after Dr. telling me they can't find anything, there's nothing wrong with me - all the while I can barely function. When you finally have some proof, it's not fun to have it ripped away. I agree though - they are not always foolproof. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 20, 2012 Report Share Posted March 20, 2012 Naomi- I am going through the same thing with lab results leading to more dead ends - it is VERY ddisappointing to say the least!I was just discussing the SFN test the other day, as I am hoping to have it done, and I was told they biopsy right above your ankle, your calf, and you upper thigh. Did they do that will you?? I tend to agree withe the "patchy" issue, if the biopsies were not done in the same place, the results could be different. I like your plan of going back to doc 1 and getting a NEW test.Best of luck, and keep fighting for answers!Claire Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 20, 2012 Author Report Share Posted March 20, 2012 Claire - both Dr's did the thigh and calf (above ankle) - so two spots. Even though I'm having some difficulty with results, I still think it's a worthwhile test. It's not really that invasive and can potentially give lots of answers. Worst part is tiny little circular scars - but I can live with that. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 20, 2012 Report Share Posted March 20, 2012 That's what I said - I'll deal with a few more scars for some answers And I don't think there is anything wrong wih demanding the tests be re-examined. Let us know what you decide to do!Claire Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 20, 2012 Report Share Posted March 20, 2012 Naomi- totally hear you about the importance of having some concrete findings that validate what you have been experiencing. It's very frustrating to me how much that REALLY matters to me. I mean, I KNOW I'm not crazy or lazy or making this up, I'm not depressed or anxious or anything else they've tried to label me with and yet when I finally got a failed TTT and some abnormal results on the autonomic screens etc, it was the happiest day of my life (in a manner of speaking. ) Just having something on paper that I could show my docs locally and say "HERE...I told you I wasn't making this up". It's frustrating to me that I even care what THEY think, when they were so dismissive of my experience that I knew all along was real.I think Rissy is also very accurate in her assessment of the mistakes that are made in labs...and really all over the medical system. I remember my sister who is a nurse practitioner having some labs done for thyroid issues. She had two different draws at the same lab and had wildly different numbers. She called the lab director and yelled at him saying..."how the **** am I supposed to ever make an accurate diagnosis if I am not getting accurate info from you people. What..am I supposed to take the best two out of three in order to make my decisions????"For the most part...I figure I just take the answer I like and "Patchy" works for me in this case. LOL Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 20, 2012 Report Share Posted March 20, 2012 I wonder how likely it would be to have a false positive or a false negative. If the pathologists at the first lab say they definitely saw damaged nerve fibers. that is hard to misinterpret. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 20, 2012 Author Report Share Posted March 20, 2012 Janie - I believe the diagnosis is based on nerve count - if you have less than you're supposed to, it's considered SFN. I'm worried that lab #1 miscounted and missed some that were there.Chaos - yes, you understand the psychological aspect of this. I spoke to a guy at lab#2 to see if they could possibly think of a reason this might happen, but he wouldn't talk to me because I'm not a Doctor. (roll eyes) I mentioned "patchy" and he said it sounded possible.Issie - if you're reading, the guy at lab#2 said he's going talk to my Dr. and see if there's a way to arrange looking at both samples to compare! This would be ideal and I hope it can be worked out. I'm feeling calmer today and will accept either result, but still want to know which is correct. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 21, 2012 Report Share Posted March 21, 2012 Keep us posted! I'm curious to hear how it turns out. Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Report Share Posted March 21, 2012 Yayyy, Naomi - I thought that might could be done. I'm still tuned in to you and what's happening with you.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 16, 2012 Author Report Share Posted April 16, 2012 Just an update - after much back and forth and confusion, I finally have an answer. Lab #2 looked at my first sample and confirmed the original results, sensory neuropathy. So at least I still have a good explanation for the pain. The explanations offered for the differing results were nerve regeneration (not possible or I'd feel better) or "sampling" - basically what Chaos said about "patchy." I'll go with that. Unfortunately, there was no sweat gland present in the thigh portion of the first sample (where the sensory neuropathy was found) so they weren't able to look at autonomic nerves... which was my whole original purpose - to find out if I have autonomic neuropathy. LOL. So this whole ordeal was not only completely frustrating, but ultimately useless. At this point all I can do is laugh at the absurdity of this whole process. I feel a like a hamster on a wheel, going round and round - never getting anywhere. Quote Link to comment Share on other sites More sharing options...
Alaska Posted April 16, 2012 Report Share Posted April 16, 2012 When you are diagnosed with neuropathy there can be many different reasons for having it (like diabetes, lupus...). So, when you get a dx of neuropathy, do they end up doing a bunch of tests to rule those underlying conditions out? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 16, 2012 Author Report Share Posted April 16, 2012 When you are diagnosed with neuropathy there can be many different reasons for having it (like diabetes, lupus...). So, when you get a dx of neuropathy, do they end up doing a bunch of tests to rule those underlying conditions out?Definitely, Yes. We tried like crazy to find an underlying cause for the neuropathy - even weird, rare things. In my case all was negative. Quote Link to comment Share on other sites More sharing options...
Alaska Posted April 17, 2012 Report Share Posted April 17, 2012 We wouldn't have it any other way, right? That would be too easy! Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 17, 2012 Report Share Posted April 17, 2012 Well, at least you have a consensus of useless information now. LOL Marginally better than wondering what the reality was. Quote Link to comment Share on other sites More sharing options...
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