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Old 04-10-2015, 11:10 AM #11
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If your symptoms are relatively recent, a skin punch may not
show much pathology. The studies being done on the dorsal roots in primates showed that the damage at the dorsal root level for a period of time, then migrates down to atrophy the peripheral nerves. Since they are not receiving the proper signals from the dorsal roots, then they atrophy away, but this takes time.

If you have had the allodynia for a longer period of time, then the skin punch may show more damage. But nothing is 100% yet.
I am just putting this out there, in case.
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Old 04-10-2015, 11:10 AM #12
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Hello Canagirl, I was on Hydrocodone 10-325 for about 6-10 months. Before I started I felt that the pain level was driving me to depression. I will not try to tell you if this is your situation but I was altering between anger, loss and had no steady sleep pattern at all. With the pain there was no resting position. Bed to lift chair to walker to bed, repeat. After I started to take the hydro as prescribed, my quality of life improved. When it came time to get off the hydro(precipitated by stricter laws) it was a little strange for the first 24 hrs but better by the first 48. I had to go "cold turkey" as my Dr. could no longer prescribe by law. I take Tylenol w/codein now and looking back, the pain has reduced over time as the Tylenol helps but I know it is no warrior over real pain. I have tried and quit Neurontin as it didn't give me any relief. I hope relief comes to you, Ken in Texas.
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Old 04-10-2015, 11:21 AM #13
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If you have had the allodynia for a longer period of time, then the skin punch may show more damage. But nothing is 100% yet.
I am just putting this out there, in case.[/QUOTE]

Ok. So my twitching started exactly a year ago. In august, I developed electrical feelings, burning, prickling, tingling etc. the burning subsided a bit and I had gotten used to the lingering lower level burning. then following acupuncture in December all hell broke loose in my body with excruciating burning and stinging literally every square inch of body and it NEVER stops, not for a second. The sensitivity to everything has been for about a month.

With this timeline is it likely the biopsy will be negative? I ask because Canada doesn't perform this test (or at least not where I live) so I have to pay $2500 to get it done by therapath in new York. I don't think I could get the neuro to redo this later if it came back negative. Should I postpone past May 20?
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Old 04-10-2015, 12:09 PM #14
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I am not an expert on this. PM glenntaj and ask him how long he had his PN before his biopsy... then that would give you an idea.
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Old 04-10-2015, 12:13 PM #15
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I won't answer for MrsD, but in my own opinion, this would be impossible to answer. Just no way to know whether the damage has gotten to the small fibers by now.

But that being said, if I were you, I would precede with the biopsy, as it will not only tell you whether there is damage now, but it will also provide a baseline. The baseline may be crucial for future biopsies to see if the density of fibers is decreasing or if the condition of fibers is changing (swelling, segmenting, etc).

Being that you are experiencing such profound symptoms, hopefully it will show some indications of damage so the doctor can properly address this (and the underlining) condition.

**Apparently MrsD answered while I was typing. YES, Glenn would be a good person to ask about his experience. My first biopsy already started showing segmented, swollen, and tortuous fibers...along with patchy distribution even when my symptoms were intermittent and waxing/waning to some degree. But I also had know dorsal root damage confirmed by another test.
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Old 04-10-2015, 06:05 PM #16
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Quote:
Originally Posted by canagirl View Post
Hi

I think I may have allodynia but not sure. Anything that causes my skin to stretch causes intense burnung/ stinging pain ( rubbing skin, stretching, even just bending feet / legs like when squatting). Being scratched on the soles of my feet felt like razor blades cut me open and that happened two weeks ago! Is this allodynia or is allodynia different.

On another note, has anybody gone on pain meds for a length of time them got off them and had less pain? My dr seems to think once I find a pain med that works I'll only need to be on it for 6-12 months then I'll be able to get off it. He feels I HSve depression ( I do now over all this pain) and that my brain is sending false signals. Once it gets relief the pain should ease up.

I don't know... My symptoms are sooo crazy, 24/7, bilateral, intense. For me to believe this is the case. I don't doubt that stress makes it worse but I don't feel like my brain is "faking " it
Hi,
The basic definition of allodynia is 'a severe burning/stinging pain from a stimulus that normally would not produce such'
Over here it is referred to as Neurological Hypersensitivity - and I have it in Spades.
If either of these are a label you feel comfortable using, do so. The most important thing is finding the cause and a treatment regimen that eases your pain.
I know Depression increases pain levels, which is why I go on and on about people getting treatment for their Mental Health as much as the Physical, but here I have never heard anyone blame it for all of someone's symptoms.

Dave.
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Old 04-10-2015, 09:10 PM #17
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Quote:
Originally Posted by canagirl View Post

With this timeline is it likely the biopsy will be negative? I ask because Canada doesn't perform this test (or at least not where I live) so I have to pay $2500 to get it done by therapath in new York. I don't think I could get the neuro to redo this later if it came back negative. Should I postpone past May 20?
I had an acute/sub-acute start to my symptoms and went to the ER twice during the onset. I woke up one morning and it was like a bed of nails from behind my eyeball, down the left side of my face and throat, which extended down my spine and leg. It was a neurological reaction in response to receiving physical therapy the night before. I went several days at a time without sleeping due to the pain. I had burning all over my body - especially upper body. I also had some autonomic symptoms (self-determined) that made it very hard to breathe.

The damage that was noted in my neurological exam (several months after onset) was temperature loss from my wrist to mid forearm. They did punch biopsy my legs 1 year after symptom onset and it did not show small fiber neuropathy - nerve fibers in normal range and no axonial swellings (and I do have some symptoms in my legs - buzzing, burning and warm water sensations). They did not punch biopsy my arm because they said they don't do that. My case is idiopathic and technically called a "skin disturbance" for medical coding purposes.

Then Neuromusular division of the teaching hospital that performed my punch biopsy recommended that I get a pain management doctor. Even if my punch biopsy would have showed SFN, they would have had the same recommendation. In their opinion the number one cause of SFN is diabetes and the number two cause is idiopathic....which means they don't want to look for the cause because they don't think they will find one.

I have done extensive reading of older posts on this message board. I believe that Glenn had a punch biopsy 3 or 4 months after his burning started, which confirmed his SNF. This would have to be confirmed by him, of course.

Last edited by madisongrrl; 04-10-2015 at 11:27 PM.
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Old 04-11-2015, 06:37 AM #18
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Default And it now is.

Yes, I did have my first skin biopsy 98 days into my acute-onset body-wide burning small fiber neuropathy, and it was the first test among the many hundreds that had been done to that point that was abnormal. But, of course, my situation is very unusual in that I had a very acute onset--my neuropathy started in my right foot but moved up my body in hours and was all over toe-to-head within three days.

It is still a good idea to get the skin biopsy--even if the intraepidermal nerve fiber densities are still within the normal statistical limits--generally between the 5th and 95th percentiles according to the McArthur protocols--it may reveal aspects of small-fiber nerve condition, such as swellings, excessive branching, or "exploded" axon fibers that might be revelatory (though skin biopsies generally cannot indicate cause).
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Old 04-11-2015, 02:51 PM #19
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Originally Posted by mrsD View Post
I personally find plain old aspirin helps my PN pain, so I use it in the form of AlkaSeltzer for rough times, like this week when we are having lots of low barometric pressure (storms) and hence I have more PN pain as a result. I also use Lidoderm patches when necessary.

That's good news on the aspirin.

MrsD have you found NSAIDs to work for your PN?


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Old 04-11-2015, 04:06 PM #20
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Yes, aspirin works the best for me. I also have arthritis...so I think compression is an issue for me these days. My original PN was from hypothyroidism.

AlkaSeltzer is very nice, as the bicarb blocks pain receptors for a short period too. There have been some papers on the acidic nature of pain... at the receptor level.
example:
Quote:
Handb Exp Pharmacol. 2009;(194):283-332. doi: 10.1007/978-3-540-79090-7_9.
Acid-sensitive ion channels and receptors.
Holzer P1.
Author information
Abstract

Acidosis is a noxious condition associated with inflammation, ischaemia or defective acid containment. As a consequence, acid sensing has evolved as an important property of afferent neurons with unmyelinated and thinly myelinated nerve fibres. Protons evoke multiple currents in primary afferent neurons, which are carried by several acid-sensitive ion channels. Among these, acid-sensing ion channels (ASICs) and transient receptor potential (TRP) vanilloid-1 (TRPV1) ion channels have been most thoroughly studied. ASICs survey moderate decreases in extracellular pH, whereas TRPV1 is activated only by severe acidosis resulting in pH values below 6. Two-pore-domain K(+) (K(2P)) channels are differentially regulated by small deviations of extra- or intracellular pH from physiological levels. Other acid-sensitive channels include TRPV4, TRPC4, TRPC5, TRPP2 (PKD2L1), ionotropic purinoceptors (P2X), inward rectifier K(+) channels, voltage-activated K(+) channels, L-type Ca(2+) channels, hyperpolarization-activated cyclic nucleotide gated channels, gap junction channels, and Cl(-) channels. In addition, acid-sensitive G protein coupled receptors have also been identified. Most of these molecular acid sensors are expressed by primary sensory neurons, although to different degrees and in various combinations. Emerging evidence indicates that many of the acid-sensitive ion channels and receptors play a role in acid sensing, acid-induced pain and acid-evoked feedback regulation of homeostatic reactions. The existence and apparent redundancy of multiple pH surveillance systems attests to the concept that acid-base regulation is a vital issue for cell and tissue homeostasis. Since upregulation and overactivity of acid sensors appear to contribute to various forms of chronic pain, acid-sensitive ion channels and receptors are considered as targets for novel analgesic drugs. This approach will only be successful if the pathological implications of acid sensors can be differentiated pharmacologically from their physiological function.

PMID:
19655111
[PubMed - indexed for MEDLINE]
PMCID:
PMC4359897

Free PMC Article
from http://www.ncbi.nlm.nih.gov/pubmed/19655111
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