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Hi
On the thought about chronic pancreatitis. I had this about 6 years ago pre all of this. Anyhow I did not have all the symptoms either but after testing I was dx with it. Im not saying you do but I dont think you have to have all the symptoms. I was placed on a special diet and my bloodwork was monitored etc. I am sorry you are not getting answers and in my experience it seems that most doctors only stay in the speciality they are in. What I mean is that they dont connect symptoms always. So it does not surprise me that the neuro felt the gi is separate. It may not be connected but sometimes I feel they just dont want to go out of the specialty they are in. Have the doctors suggested any type of meds or treatment? Have you been tested for Lupus? |
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My Neuro (atleast one of them) has been good at working with my GI, I guess because he specializes in neuropathies and sees a lot of gastroparesis that sometimes accompanies them, but besides that its like all the specialists are disconnected from eachother like you said, my care feels very fragmented and I believe that is a large reason why things have yet to be figure out. Docs have not suggested any meds really...zofran for the nausea and the midodrine but thats about it. I think lupus has been ruled out, CRP consistently 0.1, ESR usually 2-5 (think those are markers?) ANA (tested x6), ANCA, anti ro/la, and Myeloperoxidase Ab all negative, but I checked the lupus website and there are more marker tests that have not been done, although I'd think one of the above would be off...thought I read that ANA is positive in about 90% of cases. |
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^Hi, sorry to hear you are having the same issues, I was not in any type of accident prior to this happening, and have never been in a car accident...
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Hi sorry for my late reply. I had a ct scan of my stomach where I drank barium I think it is called and this was after my liver enzymes in blood work and other was off.
Have you thought more of sending your records to Mayo? |
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I did actually send my files off to mayo (many months ago, since then a lot more testing hs been done locally so I would have to resend everything) and they said they would see me, however all I have is state medicaid for insurance and they do not take that, so I am kind of in a bind...trying to figure out possibilities to fund a mayo work up at the moment...maybe getting some supplemental insurance thorugh a family member or applying for free care @ Mayo.. |
Hi PG
Your State senator, or Congressman, may have some options for you regarding getting funding to go to mayo clinic. My friends held an auction for me when I first got sick, which paid for my first surgery. I sure hope you can get to Mayo. that is where I was diagnosed and at least figured out what was wrong with me. I wish you all the best. ginnie
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I would call Mayo's billing and explain your situation. They may be able to suggest something or I think some are non profit so will work with you? I am not sure about Mayo though.
As for the pancreatitis and I guess I am asking you this does that create nerve problems? My past pancreatitis issues and now nerve problems I never thought of a connection. You stated gi issues but what about bowel problems? I know you stated you are not being treated with any meds but I wonder if you have tried any dietary changes? Have you thought about seeing a pain doctor? |
I really think you should consider adrenal function testing. It can cause nausea, POTS, fatigue, frequent urination...frankly everything you list. I too have some similar symptoms and just asked about it myself. I have a ACTH cortisol/cosyntropin challenge test set up for Thursday first AM. Your mention of the adrenalin rush might be key. They always test adrenal function first am because cortisol increases as soon as you start moving in the morning.
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I have tried some dietary changes, went dairy free for a bit, didnt notice anything, and also tried gluten free for about 4 weeks, didnt notice anything, but from what I hear that would be too short a time. Havent thought about seeing a paindoc because I dont really have pain...just have the sporadic tightness in leg muscles, so not sure what they would do for me, but I might mention it to my PCP. He did say that he thinks some sort of muscle massage therapy would be useful tho.. Quote:
I think I have actually had the test you are describing is it called a cortisol stim test? where they wake you early in the a.m., test your atch and cort, inject you then test it an hour later to see if it doubles? |
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. |
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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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. Quote:
8am fasting was 17.3, one hour after injection it went to 34.8 |
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 :-) |
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. |
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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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. |
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.. |
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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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"?? |
would 189 neurites/mm2 equate to 18.9 per mm? also is there any info on how to calculate percentiles (incorporating age, sex, etc.)?
thank you |
Hello!
I hope you get this as your post was made a month or two ago, but I would be inclined to think that you are suffering from Lyme disease. Just my personal opinion, especially after reading your Lyme test results. Lyme can cause peripheral neuropathy, which may very well explain your NLD-SFN. I know some folks with Lyme who went from 100% healthy to horribly ill in the matter of 24 hours! It does happen...I pray that you find relief!
Mytea Quote:
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Hello Again
pg,
I forgot to mention that a lot of people who have Lyme also suffer from POTS!!! Forgot to mention that! Mytea |
Hello for the last time:)
pg,
So I started posting before I read the complete thread and realized that you are still posting on this thread so you will likely get ALL of my postings! Anyway, I wanted to mention that Lyme often needs to be treated with multiple antibiotics for effective treatment. Doxy alone is not going to do it, especially at doses below 400mg a day. I wanted to also mention that not everyone with Lyme experiences herx reactions so do not let that lead you away from Lyme. Have you had any thyroid testing? Some people with Lyme also mention thyroid overactivity or inactivity...can't remember which at the moment. Lyme is a very strange disease and everyone presents differently to some extent. If your symptoms do not look exactly like those listed on the 'mayo clinic' website do not rule it out all together. I know quite a bit about Lyme and if you can get to an LLMD who is going to treat you with more than just Doxy I would look into it. Lyme symptoms can also come and go...for instance I have a girlfriend who had all of her joints flare-up and she never did find out what was causing all of her discomfort at the time. Maybe 6 months into the mystery the joint pains just went away and she hasn't had any since. She does have Lyme, but no joint pain since the first flare. Anyway, just my two cents. I am not a physician, I just wanted to give my input. Thank you for listening! |
Well--
--a "neurite" is simply an axon or nerve fiber--the part of a nerve cell that extends from the cell body and conducts electrochemical messages.
The small-fiber nerves are mostly axon--many have their cell bodies far from the eventual sensory surface and the axons, while very thin, can extend for feet in length. If it does say 189 per square millimeter of skin that actually sounds pretty high. I am not certain how that lab does its analysis, although the reference to seventeenth percentile does seem to indicate "within normal range" according to the McArthur protocols (though I think those rather arbitrarily were set to define below the fifth percentile or above the ninety-fifth percentile as "normal"). But, again, we don't know where you "started" in terms of nerve fiber density before this; seventeenth percentile may represent a dimunition for you, or it may not. From my own skin biopsy results, the McArthur protocols list the following "normal" means and standard deviations, in fibers per square millimeter : Thigh: 21.1 mean, 10.4 standard deviation Distal leg (ankle) 13.8 mean, 5.6 Standard deviation This means, going by a standard distribution, the fifth percentile for thigh is 5.2, and for distal leg (ankle) it's 3.8 (also listed on the report). My report (at least my first one) gave a nerve fiber density of 5.0 for thigh and 3.2 for distal leg (ankle) also indicated "excessive branching and swelling", consistent with a small-fiber neuropathy. |
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I have seen 3 LLMD's here in MA. and several ID docs. I have studied a great deal and belong to several lyme support groups. One doc wanted me on mepron and azithromyacin (thought I may have a touch of babesia even though 3 tests have cme back negative and I dont have fevers or night sweats, or elevated liver values, the hallmarks of babesia) other doc wanted me on baxian and plaquenil or high dose tetracycline. I did not want to do the plaquenil/biaxin due to side effects, so tried the tetra and at two weeks felt too horrible stomachwise and switched to just 200mg doxy a day (what my ID pcp wanted me on). Did a month of that and actually felt pretty bad on it. It was only till a month after being off it that I started to notice the tingle I got on my back was gone, the muscle tightness feeling I had was a little less, fatigue was down (now at the gym 4-5x a week) and my hr/bp jumps (i.e., POTS) was a little better. With that said I feel no where near 100%, but my doc insists that the full effects of the doxy, as far as symptoms go, will not be shown til 3 months off. If I start to regress at all he wants to put me on IV, if I stay where I am at now he wants to try a round of smething different, or if I continue to improve he wants to just stay where I am at. Not sure what to do... I have a stockpile of biotics, and the means to whatever treatment I want, I am just more hesitant about taking anything. I know you said doxy for only a month doesnt work (I have read this too), but it must work sometimes, I am hoping that is the case for me, if not I'll be back on something. One last thing, thorughout all of this I have had my immune system markers tested multiple times, including the CD-57 test and they have always been perfect which as I understand it usually isnt the case in someone with lyme or atleast "chronic lyme". My CD-57 was actually 238, most people with chronic lyme come in under 50 and closer to 20... so that kind of confuses me, unless I just have a robust immune system that is capable of fighting on its own. |
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Is there somewhere to find these protocols online? I'd like to get the numbers for someone of my sex, age, etc. (.e., the 5th% floor and 95% ceiling for all three sites) and calculate where I fall into place. I did a search and didnt come up with much. Do the 5th and 95th percentiles really vary that much based on age and sex? |
The percentiles do vary somewhat--
--by age more than by gender; generally the older you are the lower the normal ranges are, though the change in the distribution from say, 30 to 70 is not that extreme. Over 70, if I remember correctly, there's more of a "drop off".
I'm running out to do tutoring very soon, so I don't have time to search the old archives now, but I will later and see if I can find the original Johns hopkins papers that documented the enumeration of intraepidermal small fiber density in normal subjects, which was a project that went on over several years in the 80's and 90's. |
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I was surprised Beth Israel didnt put the range on the results from my biopsy, they just posted my numbers, no range! Thanks |
Here are a few of the papers/abstracts--
--which mention the ranges (the ones is the McArthur papers are the ones used by most labs in the US):
http://www.ncbi.nlm.nih.gov/pubmed/9865794 http://www.dafml.unito.it/anatomy/pa...pidermiche.pdf http://www.mendeley.com/research/dis...al-human-skin/ This Aetna policy paper is also good to peruse, mostly as a summary of the work done in the area recently: http://www.aetna.com/cpb/medical/data/700_799/0774.html |
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