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29 y/o, very sick for 8 months, just diagnosed w/ Non-Length Dependent SFN..

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Unread 10-25-2012, 11:52 AM   #61
pg600rr
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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
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Unread 10-26-2012, 02:19 AM   #62
mytea
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Default 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:
Originally Posted by pg600rr View Post
Background:

I was a very healthy 29 y/o, best shape of my life, gym every other day, running every morning, zero health problems and no meds. Started having 'off' days last August, maybe every other week were I would have GI upset. Then had a few prolonged periods in Sept.-Jan. of 3-5 periods when I'd feel pretty bad.

Mid-Feb. everything went downhill fast. First presented w/ extreme GI upset, 24/7 nausea, no appeptite, bloating, gas, fatigue, malaise, etc. Was in/out of ER, given fluids and sent home each time due to CBC being OK. Scope was eventually done, they found mild esophagitis and 3 distal ulcers in esophagus. Thought that was why I was feeling so bad (didnt really make sense tho) and month later recheck showed it had healed itself. Through March continued to feel worse, symptoms included:

Symptoms (past & present):
-GI symptoms (nausea 24/7, gas, bloating, distention)
-mid back pain (dull)
-very fatigued 24/7
-chest tightness
-orthostatic tachycardia [diagnosed with POTS by Dr. Freeman @ Beth Israel]
-lost 18 lbs. 2/25-3/15
-unable to gain much weight back
-not sleeping (getting up sometimes 3x night to urinate 4/6/8am)
-constant varying levels of dizzyness/lightheadedness (usually worse when I stand up from sitting), will get numbness on forehead sometimes, feel like passing out sometimes
-feel very cold alot, especially hands and feet
-whole body feels very sick
-sporadic dull headaches (usually just above/behind eyes but varies)
-muscles in legs, arms upper back feel tight/achey from minute I wake (horrible feeling) worse in the a.m., will have for a week or two then not for a few weeks...
-left side gland under tongue (almost feels swollen on the inside, like something is in there) can pinpoint exactly where this feeling occurs
-usually have feeling of adrenline rush through body upon waking in the a.m.
-neuro noticed left hand temors upon evaul
-very sporadic, non-itchy rash, just blothcy, usually in center of stomach/chest area, sometimes on neck or ribs (havent noticed in atleast 4 weeks) [see pics]
-eye doc has been following left eyelid droop (may be caused from Lasik surgery I had done in 2010)
-sporadic cheek muscle twitch left side
-sporadic eyelid twitch left side
-restricted breathing through nose (often have to sleep breathing only through mouth)
-sometimes get sensation of clogged/forced swallowing @ top of throat, feels farther back in head, around point where sinus cavities emptying into top of mouth/throat (almost like traying to swallow with your nose plugged)

From 2/25 till now I have been to all major Boston-area hospitals, seen 16 specialists trying to figure out whats going on. So far they have not found much except for "mild" POTS, borderline lyme WB's, some atypical lymphocyctes (8%), and most recently, the big finding, NLD-SFN, biopsy was normal at right calf, abnormal at thigh. Currently, many of the symptoms above have changed or lessened. The major ones continue to be the GI and the feeling in my legs (sometimes shoulders/arms to a lesser degree).

Testing I've Had:
90+ pages of blood work
EMG
EKG (multiple)
Echo (multiple)
Holter (multiple)
UGI w/ small bowel
Upper Endoscopy
GES (normal, although doc said it could have been a good day)
Breath Test: SIBO, lactose, fructose
Allergy Blood testing and select skin testing
CT: Abdominal/Pelvis/Chest/Sinus
MRI: Full Spine and Brain
Autonomic Testing x2 (cardiovagal, adrenergic, and auxiliary all normal, sudomotor showed sweat output was normal but QSART showed length dependent pattern w/ a decrease of sweat output distally atleast 33%)
Skin punch biopsy (showed NLD-SFN, nerve density reduced 52% @ thigh, normal at calf)

Questions:
I have yet to really get into see a specialist in SFN or the NLD kind. The nuero that diagnosed mine said that it was "mild" and some with this level of damage might not even experience symptoms, so I dont understand why I feel like I am dying most of the time! So I do have a few questions, any comments, suggestions, thoughts, answers all welcome :-)

1. do the sensations I am describing sound SFN related? I have NO burning, stinging, tingling, numbness, etc. it is like a jello-y, tight feeling, very unpleasent, comes and goes, mainly in glutes, thighs, and calfs (weird because biopsy showed no damage in calfs...) why would it be in the calfs if no damage there?

2. If the sensations are being caused by the SFN shouldnt they be somewhat consistent and not cycle?

4. read about dorsal root ganglia damage sometimes being related to NLD-SFN..how would this present? my neuro said it is not relevant to me, because my EMG was normal, I have no coordination or muscle weakness problems, and no difficulties with sensing heat/cold/vibration...

5. anything specific I should I have my PCP doc testing for to find an underlying cause given the acute onset, the progression, results of above tests, my age/health, symptoms, etc.?

Thank you so much!
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Unread 10-26-2012, 02:23 AM   #63
mytea
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pg,

I forgot to mention that a lot of people who have Lyme also suffer from POTS!!! Forgot to mention that!

Mytea
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Unread 10-26-2012, 02:43 AM   #64
mytea
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Default 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!
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Unread 10-26-2012, 07:28 AM   #65
glenntaj
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Default 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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Unread 10-26-2012, 08:10 AM   #66
pg600rr
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Quote:
Originally Posted by mytea View Post
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!
Hi thanks for the reply and input. Lyme (or atleast some infection likemycoplasma, EBV, etc.) has thought t be the cause of my issues all along. Regarding lyme, a lot of my symptoms fit, I live in one of the highest lyme areas in the country, have had ticks on me in the past, hike, bike, play soccer, etc. had the borderline tests, and do feel like I have responded somewhat to the doxy treatment I got.

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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Unread 10-26-2012, 08:20 AM   #67
pg600rr
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Quote:
Originally Posted by glenntaj View Post
--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.
Hi, thanks for the reply. It does say 189 per square millimeter of skin. I actually faxed the report to my neuro docs @ Beth Israel to get their thoughts as to how it compared to the 100% "normal" biopsy they did. They responded that Dr. Oaklander @ the MGH nerve injury unit has created her own sysmem of interpretating results, whereas @ Beth (and Umass) they use the John Hopkins protocol? I am guessing that is the McArthur that you mentioned. So they basically said they have no idea what the 189 per square millimeter of skin means or how to get it converted to the smaller number, etc.

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?
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Unread 10-27-2012, 06:21 AM   #68
glenntaj
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Default 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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Unread 12-14-2012, 08:53 AM   #69
pg600rr
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Quote:
Originally Posted by glenntaj View Post
--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.
Hi, I know its been some time, but just wanted to see if you were able to come across that, I've continued to search online to try and find the "normal" range for certain age groups but cant find it....

I was surprised Beth Israel didnt put the range on the results from my biopsy, they just posted my numbers, no range!

Thanks
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Unread 12-15-2012, 07:09 AM   #70
glenntaj
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Default 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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