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Old 09-18-2012, 04:26 PM #51
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I believe that pancreatitis or chronic pancreatitis, affects blood sugar control, which then affects the nerves. It is a secondary thing.

This chronic nausea? That is your main symptom. And that is
either liver/gall bladder or pancreas (they share the common bile duct). Is the nausea all the time, or only when you are hungry, or only after eating? In other words, at specific times or all the time with no trigger.

The pancreatic diet is very low fat, and NO ALCOHOL at all.
http://diet.ygoy.com/diet-for-pancreatitis-2/

No smoking, and small meals, basically. This will reduce the load on digestion and rest the pancreas.
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Old 09-18-2012, 05:10 PM #52
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Cortisol stim test is the same thing as the challenge test. I'll assume yours was normal??

I have had autoimmune pancreatitis...at least 4 bouts. Complete rest of the pancreas was always the course...which means inpatient, and NPO for about 3 days. During other minor flares I have done okay with NO fat diet (of course NO alcohol) and very little intake. Everything you put it requires action from the pancreas...fats more so then other food/liquids.

I'd also be interested in hearing your answers to MrsD's questions.
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Old 09-19-2012, 08:50 AM #53
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Quote:
Originally Posted by mrsD View Post
I believe that pancreatitis or chronic pancreatitis, affects blood sugar control, which then affects the nerves. It is a secondary thing.

This chronic nausea? That is your main symptom. And that is
either liver/gall bladder or pancreas (they share the common bile duct). Is the nausea all the time, or only when you are hungry, or only after eating? In other words, at specific times or all the time with no trigger.

The pancreatic diet is very low fat, and NO ALCOHOL at all.
http://diet.ygoy.com/diet-for-pancreatitis-2/

No smoking, and small meals, basically. This will reduce the load on digestion and rest the pancreas.
The chronic nausea for the most part is very low level, but horrible nevertheless, I dont feel like throwing up and never have, but it is a very uneasy feeling.

Its kind of hard to say what affects it, but I wouldlean toward it being present almost all the time to some degree, but ma be worse when I am hungry (?) not really 100% sure though.

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Cortisol stim test is the same thing as the challenge test. I'll assume yours was normal??

I have had autoimmune pancreatitis...at least 4 bouts. Complete rest of the pancreas was always the course...which means inpatient, and NPO for about 3 days. During other minor flares I have done okay with NO fat diet (of course NO alcohol) and very little intake. Everything you put it requires action from the pancreas...fats more so then other food/liquids.

I'd also be interested in hearing your answers to MrsD's questions.
Yea, they said mine was normal, forget the exact numbers but they were looking for the coritsol to double one hour after injection and that is exactly what it did:

8am fasting was 17.3, one hour after injection it went to 34.8
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Old 10-18-2012, 08:34 AM #54
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UPDATE:

Hello all,

So its been a while since I posted to my thread here.... I have continued to under go testing for various things, but have been feeling quite a bit better over the past few weeks to a month. I have really stepped up working 6 days a week and my laying/standing hr/bp measurements for the POTS are looking much better (only jump 16-24 points, from 30-50 prior) not sure why.

Anyway, regarding the SFN I thought I had...this was strictly based off the positive skin biopsy and nothing else, as I do not have the numbness, burning, pain, etc. that so many describe, because of this my neuro's at BI (dr. freeman) were skeptical of the biopsy I had done at Umass and repeated it on the same leg, slightly to the left of the last biopsy sites. Sure enough each one came back well within normal, with absolutley no defects seen...

I am not sure what to think? They said that it was very unlikely it completely healed (only been about 4 months since my last biopsy) and the postive I got from Umass was most likely due from artifact or damage done during procedure (as the Dr. there actually froze the spot he biopsied from with a spray can...guess this shouldnt be done).

I asked if SFN damage could be found in one spot on the thigh but then perfectly normal a few centimeters over and they said no, damage to the nerve fibers in the skin would be seen...so they seem to be confident with their findings compared to the first biopsy.

Any thoughts? does this sound right? Freeman is suppose to be world renowned in this area so I tend to trust his judgement but its always good to hear other opinions :-)
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Old 10-19-2012, 06:04 AM #55
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Default It is possible--

--for skin biopsy results to show spotty damage, or incomplete damage, or damage in some places and not others.

A lot of it has to do with the interpretation of the tests. As I've written here before, many doctors rather lock-step accept the pathology reports that indicate definite evidence of small-fiber neuropathy only in accordance with the McArthur protocols originally developed at Johns Hopkins--interepidermal nerve fiber density below the fifth percentile or above the ninety-fifth percentile for age and location matched "normals". But since most people don't go in for an numeration of their small fibers when asymptomatic, it's hard to say what level of nerve fiber density they started at, and there is a wide range. For example, someone at around the fifteenth percentile may not be listed as having evidence of neuropathy, but if we had known years ago they were around the fiftieth percentile, to me that would be evidence of some process.

This is why it's good to get the records of the density enumeration, and why the specialized labs are also supposed to report the condition of the fibers observed under electron microscopy--abnormal branchings, swellings, evidence of inflammation, etc.
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Old 10-19-2012, 07:40 AM #56
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Kind of odd that Johns Hopkins does not include the density enumeration on their skin biopsy results. I have had two skin biopsies at JH and both specify condition of the fibers (in great detail), but NO density percentages. So there is no way to determine in subsequent tests whether there is progression or improvement.



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Originally Posted by glenntaj View Post
--for skin biopsy results to show spotty damage, or incomplete damage, or damage in some places and not others.

A lot of it has to do with the interpretation of the tests. As I've written here before, many doctors rather lock-step accept the pathology reports that indicate definite evidence of small-fiber neuropathy only in accordance with the McArthur protocols originally developed at Johns Hopkins--interepidermal nerve fiber density below the fifth percentile or above the ninety-fifth percentile for age and location matched "normals". But since most people don't go in for an numeration of their small fibers when asymptomatic, it's hard to say what level of nerve fiber density they started at, and there is a wide range. For example, someone at around the fifteenth percentile may not be listed as having evidence of neuropathy, but if we had known years ago they were around the fiftieth percentile, to me that would be evidence of some process.

This is why it's good to get the records of the density enumeration, and why the specialized labs are also supposed to report the condition of the fibers observed under electron microscopy--abnormal branchings, swellings, evidence of inflammation, etc.
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Old 10-19-2012, 09:00 AM #57
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Quote:
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Kind of odd that Johns Hopkins does not include the density enumeration on their skin biopsy results. I have had two skin biopsies at JH and both specify condition of the fibers (in great detail), but NO density percentages. So there is no way to determine in subsequent tests whether there is progression or improvement.
Quote:
Originally Posted by glenntaj View Post
--for skin biopsy results to show spotty damage, or incomplete damage, or damage in some places and not others.

A lot of it has to do with the interpretation of the tests. As I've written here before, many doctors rather lock-step accept the pathology reports that indicate definite evidence of small-fiber neuropathy only in accordance with the McArthur protocols originally developed at Johns Hopkins--interepidermal nerve fiber density below the fifth percentile or above the ninety-fifth percentile for age and location matched "normals". But since most people don't go in for an numeration of their small fibers when asymptomatic, it's hard to say what level of nerve fiber density they started at, and there is a wide range. For example, someone at around the fifteenth percentile may not be listed as having evidence of neuropathy, but if we had known years ago they were around the fiftieth percentile, to me that would be evidence of some process.

This is why it's good to get the records of the density enumeration, and why the specialized labs are also supposed to report the condition of the fibers observed under electron microscopy--abnormal branchings, swellings, evidence of inflammation, etc.
To go more in to my biopsies (I have had 3)...

First @ Umass Medical Center in Worcester w/ Dr. Novak, taken from R ankle and R upper thigh. Sample sites were frozen with a spray prior to being taken. Sample was sent to Therapath, NY. They did report the %'s, ankle was well within range (dont remember number) but thigh sould 55% reduction in nerve fibers (evident of SFN), neither sample noted any abnormalities though, i.e., swelling, etc.

Second @ Mass General as part of a clinical trial with Dr. Oaklander, only taken from left ankle, sample sites numbed with cream prior, again gave %'s, was well within normal with no abnormalities. They do not send te samples out, she counts them and analyzes them herself, said she has doen over 1000.

Third (done just a few weeks ago), @ Beth Israel w/ Dr. Freeman & Gibson, taken from Right ankle, low thigh and mid thigh, sample sites numbed with cream prior, gave %'s, all were well within normal limits w/o any swelling, branching, etc. Like MGH, they count and analyze themselves I believe.

Its just weird that in my previous biopsy from the same exact site, it should 55% damage and now it shows none (at any of the subsequent sites). Both Dr. Oaklander and Freeman/Gibson said that there is a high chance for artifact (assuming htis means fake damage) depeneding on how the sample is handled, what instrumentation is used, how it is sent out (if that is the case), what is used for anesthesia, among other possibilities, and that it is easy to get a false positive (which is why the test should be repeated to check on the sites)...

But from what I understand most neuro's (at least at the smaller hospitals where my 1st biopsy was done) dont like to repeat the testing, whether that be for insruance cost reasons, policy, or they dont see any real benefit from it.
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Old 10-23-2012, 01:01 PM #58
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I am still looking for the results from my previous skin biopsy but here are the #'sfrom the most recent one (from which the neuro's said that I do not have evidence of SFN and that the one numbr being "off" in the first biopsy was due to lab error/artifact):

proximal thigh: 15.6 per mm

distal thigh: 11.2 per mm

distal leg: 12.8 per mm

I also asked about te description of the fibers themselves, i.e., branching, swelling, etc. and was told there was nothing of that nature present in any of the samples..
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Old 10-24-2012, 05:57 AM #59
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Default If these figures--

--represent fibers per cubic millimeter of skin, they are well within the fifth-percentile to ninety-fifth percentile "normal" range for adults.

Still, one does wonder what your figures would have been before symptoms were noticed.

The good thing is that since this a non-invasive method of enumerating small-fiber nerves, and is readily reproducable, you can be monitored with multiple skin biopsies over time to see if there are any changes to the figures or to the condition of the nerve fibers.
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Old 10-25-2012, 11:28 AM #60
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Quote:
Originally Posted by glenntaj View Post
--represent fibers per cubic millimeter of skin, they are well within the fifth-percentile to ninety-fifth percentile "normal" range for adults.

Still, one does wonder what your figures would have been before symptoms were noticed.

The good thing is that since this a non-invasive method of enumerating small-fiber nerves, and is readily reproducable, you can be monitored with multiple skin biopsies over time to see if there are any changes to the figures or to the condition of the nerve fibers.

Those were fibers per cubic mm of skin and were from the most recent biopsy taken (I believe it was around 10/5/12) and they were done on my right leg... The report doesnt give the %'s but I am sure I can figure them out some how.

I also dug up the report from a biopsy that was done at Mass General on 9/5/12 as part of a clinical trial. It was done on my left leg and they ONLY did one biopsy and it was from the ankle site.

It reads, "sections revealed mildly reduced density with normal appearance of remaining epidermal and dermal innervation." And then went on to say, "Morphometric quantitation of epidermal nerve endings yeilded a density of 189 neurites/mm2 of skin, at the 17th centile based on our labratory's age, sex, etc. etc."

What does 189 neurites/mm2 of skin equate do in regards to my most recent biopsy which only listed "12.8 per mm"??
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