Hi Im new to this forum and have found it quite informative reading thru some of the posts. I have a general question regarding "scar tissue" and its progression along with neuropathic pain and its progression & would appreciate any information from members who are more knowledgeable than myself on these issues. I am not sure if I should be posting under this peripheral neuropathy section but will give it a try.

Description of pain; Like being burnt alive, when acute in specific spots with electrical needling pain in area where visible scar tissue exists and other areas where one supposes scar tissue exists.

What the pain is doing; It is spreading from right side to left

What the scarring is doing ; It is spreading from right side to left

many thanks
burnmyo

Hello,
There can also be internal/non visible scar tissue, some people get that after surgeries or even from injuries, it can be quite problematic. Can cause irritation to the nerves, lymph nodes and muscles.

you might want to read on our RSD/CRPS forum to see if your pain & symptoms fit. RSD can set in even after a minor injury, if pain lasts long after the normal time & spreads or increases RSD should be looked into.
http://neurotalk.psychcentral.com/forum21.html


How long ago was your burn injury?

Hi Jo,

Thanks for your response. I am aware of arachnoiditis. I will chenk the RSD/CRPS forum.

My injury was not a burn but the pain I feel is like a burning. My pain is of long duration 14 or so years now. Most probably due to spread of infection from an upper wisdom tooth into sinuses and perhaps brain.? (neurolgist says limited encephalopathy could be the cause of the myoclonus palatal) . I had excruciating pain, was on lots of antibiotics for a R sided sinus infection but infection cleared but pain still there....like it was in the bones. So I took myself to the dentist and he extracted the upper R wisdom tooth but no antibiotics given. He told me that the tooth was infected right up to the nerve root. When I arrived home I had a cold sensation and tingling of one half of my face upper lips and R sided throat and pain got worse and changed.
From there things went downhill.

I've had it on the right side of my face (trigeminal neuralgia now I've been told its trigeminal neuropathy). Attacks over many years include right sided facial cramping/burning and right sided neck&throat cramping and burning.

Entire R side of body is now at a different temperature to the left (always) even at rest. R hand and R foot and R face/cranium can have extreme Temperature changes. Burning/freezing/cramping plus definite areas of numbness

Areas of numbness along trigem nerve and at back of neck behind and below right ear. THese have been the areas of major cramping & burning during the years.

My picture is further complicated by palatal/pharyngeal/laryngeal myoclonus. Spinal cord can burn and makes it difficult to lay on my back.
Same with R side of body especially neck /throat/face areas touching pillow...they burn and spasm.

But my main concern is that my neurologist thinks I have small fiber neuropathy and he said something about demyelination. He also said trigeminal neuropathy. I asked about the throat (where the visible redness is on the right side (dental needle injection site) and where I get the burning and sharp electrical needling stabbing pain with spasms & myoclonus and he said that you can get neuropathic pain in the throat.

DO you know of anyone that has small fiber demyelinating neuropathy in the throat that spreads this way. I ask, because now, its forming as small blood vessels that coelesce on the left side accompanied by burning/needling/spasms/myoclonus.

I am quite concerned about this because I also have dysphagia (videofluoroscopy) . I have experienced hoarseness, dysphagia and breathing difficulty on R side (nasopharynx/palate cramp) and (Laryngo/pharyngeal cramp). It is quite frightening when it happened.

But now I know the left side is going also...I am assuming it is progressive and involves the vascular system and neuropathic pain.

THe only testing my neurologist has done was EMG but could not do para cervical area (which was the most impt) because it said on report patient was unable to relax. But this was incorrect since that side of my neck was so tight that there was already spasming activity there at rest. When I explained this to the neurologist he said they don't usually test that area anyway.

I suppose I would like to have someone to talk to about this so I can make plans for future (if you know what I mean).It is very frightening to actually see the scarring & neuropathy progressing everyday and worsening and very frustrating asking oneself: Is it treatable, is it an autoimmune neuropathy?
I'm beginning to think definitely autoimmune mechanisms are involved but don't know what to do to prove it/treat it.


Autonmic dysfunction definitely present , if not autonmic neuropathy.
Pain in chest where esophagus meets stomach (probAbly neuropathic also)

If you know of anyone like this please let me know. FOR at least a decade I have told my husband, "I wouldn't know whether I have a sore throat or not because it always "burns" to some extent. The worst of it, is when it burns electical with stabbing needles and spasms/myoclonus (Audible).
Anyhelp/ suggestions from anyone would be welcome.

We do have a Trigeminal Neuralgia forum - http://neurotalk.psychcentral.com/forum26.html

And here's the link to our main topic page if you haven't found it yet- http://neurotalk.psychcentral.com/index.php

Feel free to explore around and ask more questions, you may find something or someone with help on one of the other forum topics.

Each forum has Sticky threads full of useful information about each condition right above the thread list.
those are full of info also and may be of help to you.

--have you been worked up and tested?

From what you're saying, it sounds very much like either there is some sort of brain/spine thing going on (have they done full MRI with and without contrast, any evoked potential testing, lumbar puncture, to look for central nervous system demyelinating disease, and/or an infectious process such as you suggested?), and/or some sort of rheumatologic or connective tissue/vascular autoimmune disorder (have you had extensive work-ups for the family of anti-nuclear and related antibodies?).

Trouble is, it's very hard to distinguish a peripheral nerve problem from a central nervous system one--they can produce exactly the same symptoms, and usually diagnoses are arrived at (if they are arrived at) by exclusion.

BTW, a "small-fiber" neuropathy is by definition NOT demyelinating--the small-fibers are clinically defined as the non-myelinated sensory and autonomic fibers axons. It's certainly possible to have neuropathy of the larger, myelinated fibers (which include all motor fibers and larger sensory ones that subsume the sensations of vibration, position, and mechnaical touch) and of the small unmeylinated ones (which sumsume the sensations of pain and temperature) simultaneously.

Nerve conduction studies and EMG cannot diagnose a small-fiber problem; those nerves are simply too small to be measured using the current technology. (Often, even large fiber syndromes are not noticed by these tests until the damage is quite extensive.)

Thanks for your interest and comments glen.

[QUOTE=glenntaj;355006]--have you been worked up and tested?
(have they done full MRI with and without contrast, any evoked potential testing, lumbar puncture, to look for central nervous system demyelinating disease, and/or an infectious process such as you suggested?), and/or some sort of rheumatologic or connective tissue/vascular autoimmune disorder (have you had extensive work-ups for the family of anti-nuclear and related antibodies?).

Its not that easy to get worked up and tested here in Australia. Its very hard to get an MRI done. But the ENT specialist who focused on the myoclonus palatal and pharyngeal (nasoendoscopy) did order one.
It was an
MRI Head C+, MR Head, MR control (whatever that means)
looking for cause of myoclonus Report says;
MRI BRAIN (mi) No cause for myoclonus identified.
Itake it evoked potential testing is different from EMG? I've only had EMG on large leg, arm wrist ankle and that was it. No lumbar puncture done
NO MRI ever done on neck or spinal cord.
How does a lumbar puncture help identify demyelination?
I have had some rheumatological work done but not extensive;
RH factor of 23 marginally elevated (<20) and is of doubtful significance.
First time ANA done it was negative.
Neurologist ordered some recent tests and he did call me to tell me that my
ESR or CRP or both was up (these have always come in high in the past) and he said the ENS was up. I'm not sure what this means and hope to discuss it with him at next visit.
What sort of panel should I ask for if the ENA has come back high?

Trouble is, it's very hard to distinguish a peripheral nerve problem from a central nervous system one--they can produce exactly the same symptoms, and usually diagnoses are arrived at (if they are arrived at) by exclusion.
I see. I suspect my pain has central features since I have described my pain to my husband over the years as
"It doesn't matter if there is a hell or not since I'm being continuously being burnt alive on earth anyway."
I know what the triggers are and I know that the BURNING and CRAMPING happen together. WIth lesser burning there is spasms.

Thankyou glen for your post again. It was very informative. Im not at all sure the way I should proceed. I think the medications themselves become part of the disease and perhaps we develop allergies to them. Also witdrawal from medications can cause exacerbation of symptoms.

I definitely see colour and temperature changes in my hands and that is indoors. Same for face. I get what I slowly discovered is called Dermatographism, so this is another clue.

None of it helps with slowing down the process that is occurring in my soft palate and surrounds (pharynx and larynx) which I am certain involves blood vessel engorgement of some sort resulting in scarring.

B12 and folate normal EBV IgG positive
The dysphagia report mild oro-pharyngeal dysphagia . Myoclonic activity appearing between swallows is impacting on rapid swallow initiation. recommendations; soft moist diet /thin fluids/ alternate b/n food and fluid boluses and neck extension to aid swallow intiation.

My neck feels weak on the right side, like I always want to rest it against something.
many thanks again

--the ESR/CRP results you're reporting does hint that thre's an inflammatory process going on, which can point to many things (including autoimmune disorders).

Evoked potential testing is when you're head is wired up and then you're presented with visual/auditory/tactile stimuli and the speed of your nerve impulses to and from the brain are tested--it can point to central nervous system demyelinating disease if these responses are slowed or patchy. Lumbar puncture, too, can point in this direction if certain proteins are found in the cerebrospinal fluid. Both of these are often used to look for conditions such as multiple sclerosis when brain or spine MRI's are equivocal.

They probably should be looking at far more antibody classes than the RH factor and ANA, though--there are so many others, including some that are specific to motor or sensory nerve.

A lot of us use the Liza Jane spreadsheets:

www.lizajane.org

These are probably the most comprehensive list of tests for processes that underlie neural symptoms (both central and peripheral) yet devised; very good for tracking tests results over time and suggesting tests to doctors they're not likely to think of. (It does sound as if your work-up has not been as extensive as it needs to be.)

Thanks glen, I've checked the spreadsheets and they're quite extensive indeed. I wonder if the neurologist would even know where to send samples to get these tests done here in Australia.

I'll have a hard time convincing him to undergo further testing but I will try especially seeing the ENA came in high.

I had a major facial/head and neck flare last night...all "burning up" and excruciating pressure pain everywhere. TOok 2 meryndols and felt a little of the R sided facial and R neck throat area spasming and took little edge of the pain. Has taken me all day to recover.... so Im late posting back.

Thanks for your suggestions again...all we can do is keep trying..But today has been a hard day.
THINGS that affect my condition
moving my arms/hands increases myoclonus in palate/pharynx/larynx..if it gets really bad the areas will Cramp painfully and burn electrical

(this is frustrating since you need your arms and hands for everything)

Physio triggers a delayed attack

tight clothes are out

Foods I avoid; cafffeine, all packaged foods, sugar

Eating pattern;Alkaline foods and anti-inflammatory foods, small meals, one food group or two at a time. Must not eat alot at any one time or ever since my body tends to "React to the food..." with an immune response??? I don't even know if this is possible. But I can tell that I've reacted to my own body's production of heat after digestion (when on very low medication) and myoclonus and burning at its worst..

Temp tolerance limited; cold causes R side of face to freeze/throat/neck /hand cramp/spasms

also have problems with heat.

Don't wear metals, Use bicarb and salt to brush teeth (for sensitive teeth & burning mouth)

Too much auditory/visual stimuli. For most of today ive avoided EMR, no TV, no computer and have been in a dark room so as to re-strengthen myself.

I use ice if I have to and have been for a decade or so (on face/head/neck/throat/ back upper right quadrant spinal cord)

At any rate I don't know how all these above triggers relate to others who have neuropathic pain

Johns Hopkins will send a kit with a return address, for the
skin punch test. Instructions included.
I don't know if the tissue samples will survive a trip from OZ,
but its worth a try to investigate.
Here's the phone # of the Head (Dr Griffin)of the JHH Neuro dept.
410-955-2227 - talk to Denise

Thanks bob.

are you saying that you can perform the test on yourself?

Any one with neuropathic pain have similar sensitivities to what I described above?

Also Liza's charts are great but don't indicate which tests are looking for which type of neuropathy or the significance of the test results. I wonder if all neurologists would even be familiar with all these tests?