[janieg]

Therapath put out this PR a couple of days ago:

http://www.prnewswire.com/news-relea...300206822.html

If I'm reading it right, skin biopsy results can be skewed if they are not kept cold enough when "preserved" in one of two common substances (fixatives) used for transport to Therapath.

If you look at their website, there's big reason hospitals/doctors might use the fixative that is subject to error prone results if not kept cold:

1. The shelf life of the problematic one is a year, while the shelf life of better option is only 4 weeks.
2. The better one must be kept refrigerated until used, while the other one can be stored at room temperature.

https://www.therapath.com/fixative

So if you get a biopsy, it sounds like you might want to request the PLP fixative...if it's even an option. Obviously there are reasons hospitals would only offer the Zamboni fixative.

[Healthgirl]

Does this mean that people are being diagnosed with nerve fiber damage who don't actually have damage? Or that is being under diagnosed?

[janieg]

Originally Posted by Healthgirl

Does this mean that people are being diagnosed with nerve fiber damage who don't actually have damage? Or that is being under diagnosed?

I'm reading it as over-diagnosed.

"Specimens shipped in Zamboni's solution at ambient temperature presented with a significant reduction of immune staining that could lead to an incorrect diagnosis of small fiber neuropathy.

_______________________________________

[DavidHC]

Just a couple of thoughts. I agree, I think that's the most natural way to read it, but physicians often speak without precision when it comes to language itself, so I can also see them perhaps meaning it neutrally so both false positives and false negatives: "incorrect diagnosis" period. But perhaps they're speaking precisely here and they just mean what you say. I'm inclined to read it like you, at least naturally, but I can't be sure. Regardless, it's worth asking about this and noting that one has a preference for one over the other, given this information. Also, since they look for morphology on these biopsies too, it's worth noting that improper handling may degrade both the nerve fiber density and the morphology of the sample, I don't know.

Thanks for posting this. Before my biopsy I had read that often the results can be influenced by poor handling, but I didn't know the solution mattered in this way.

Originally Posted by janieg

I'm reading it as over-diagnosed.

"Specimens shipped in Zamboni's solution at ambient temperature presented with a significant reduction of immune staining that could lead to an incorrect diagnosis of small fiber neuropathy.

_______________________________________

[Healthgirl]

All I know is that I wish mine was misdiagnosed! I even asked the doctor if there was any chance that it was a false positive. Of course she said no. I was so crushed to read the results of significant reduced density.

[madisongrrl]

Originally Posted by Healthgirl

All I know is that I wish mine was misdiagnosed! I even asked the doctor if there was any chance that it was a false positive. Of course she said no. I was so crushed to read the results of significant reduced density.

Where are you at these days with tracking down a cause?

[Neuroproblem]

it does make sense, samples should be kept cold, because the heat will activate protease or degradation of samples.

[Cliffman]

Originally Posted by Healthgirl

All I know is that I wish mine was misdiagnosed! I even asked the doctor if there was any chance that it was a false positive. Of course she said no. I was so crushed to read the results of significant reduced density.

I felt the same way. I didn't even get the news directly from my doctor, the lab gladly emailed me the results. When I opened the report I had to read it twice before it fully registered in my mind. I will never forget reading "significantly reduced density" in big bold caps. I was crushed to say the least! Yet when I saw my Neuro doctor she was almost gleeful with the results. She said with a smile "this is good because now we have a diagnosis". She insists that patients with SFN can lead a very normal life if they just take the medicine. She made an comparison to someone that has high blood pressure. It can't be cured so you just take blood pressure medicine and all is fine. It angers me because I don't think one can compare high blood pressure to the hideous nature of SFN, especially given the drugs used are not truly designed for nerve pain.

Cliffman

[Healthgirl]

Originally Posted by Cliffman

I felt the same way. I didn't even get the news directly from my doctor, the lab gladly emailed me the results. When I opened the report I had to read it twice before it fully registered in my mind. I will never forget reading "significantly reduced density" in big bold caps. I was crushed to say the least! Yet when I saw my Neuro doctor she was almost gleeful with the results. She said with a smile "this is good because now we have a diagnosis". She insists that patients with SFN can lead a very normal life if they just take the medicine. She made an comparison to someone that has high blood pressure. It can't be cured so you just take blood pressure medicine and all is fine. It angers me because I don't think one can compare high blood pressure to the hideous nature of SFN, especially given the drugs used are not truly designed for nerve pain.

Cliffman

My first doctor was the same. She was very cold and matter of fact. When responding to my distress at this unexplained nerve damage, she said "you are not in a wheelchair". "You will need medications to manage this". The meds she wanted to put me on right away were severe so I got a new doctor. He is completely on board with me not wanting to take daily meds, understands how awful it is and gave at least a little hope.
I think some people with SFN that mildly affects the sensory nerves might be able to live a normal life. Different people are affected more deeply into their nervous systems and they have different causes. For some it is just some occasional tingling and numb spots and for others it causes autonomic problems that cause malfunctioning of the very bodily functions taken for granted by those who "live a normal life". The pain can be debilitating to the point where it can knock one down to the floor or leave you holding onto a wall or counter top. If eyes are affected, the flickering lights, tunnel vision, blurriness can make it hard enough to walk, let alone drive. I could go on and I know I'm preaching to the choir here, but how is that a normal life?
If any of these doctors could experience a day like this, I think they would realize that for many people this is deeper than the findings of just "sfn" and skin sensations.

[Healthgirl]

Originally Posted by madisongrrl

Where are you at these days with tracking down a cause?

No where yet. I have an appointment with a toxicology dr and a functional md next month. Hoping they can help.
How are you doing with the lyme treatment?