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Old 02-29-2008, 12:21 PM #1
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Confused One and ONLY symptom??

I had a skin punch biopsy done on my calf and thigh last year. The results came back as small fiber peripheral neuropathy. The only symptom I have is just a burning shooting pain in both of my feet........ no tingling, no numbness, just the pain. Does anyone just expierence this symptom only?

Thanks,
Michele
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Old 02-29-2008, 02:28 PM #2
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Default I have to ask????

There have to be other indications? I mean, a doc would NOT have done the biopsy w/o other factors pointing to justifying a biopsy being done?
Going Down Liza Janes' lists?
Nerve Conduction Studies, and Velocity Studies?
Immune blood and spinal work?
MRI's and CT's????
Spinal Testings
Cardiac tests and monitors
Sonos of leg vascular issues?
Bloodworks?
Glucose Testings?
IF all THESE were absolutely negative...I'd find a doc hard put to justify the billing to an insurance company...get my drift? There has GOT to be something in your records that said: DO THIS TEST....and you have to get copies of your records to find out for yourself.
And NO! I am not a doc, BUT I did get copies of my records and saw things there that the docs did NOT! And after a couple of years of trying, I'm still bugging them about this # and that #...I call it working out the 'bugs'. One bug at a time. And, a couple of my 'bugs' have turned out to be right. Sigh.
First you have to find [HOPE for all here!] a neuro you can communicate with, trust and think actually listens to you. Then you have to BUILD that relationship with the worst/key/primary issues/concerns. Then address the details bit by bit each visit. It takes quite a while. BUT keepat it and each issue will get it's time.
Michele? I have to believe that you probably have more things going on than the shooting/burning pains in the feet! I know as I've had them, now things are down after years to a 'being under a high-tension-wire' HUMM. It's enough thank you!

I do hope that both Glenntaj and BobB will respond to the whole small-fibre issue more articulately than I have done. I've both small and big. [Sigh again?] To me, they are the smartest experts in this quarter that I know!

's - j
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Old 02-29-2008, 03:27 PM #3
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Many of us read extensive;y about symptoms and illness in books and on the web. I feel when I go to doctors, I may know more than they do about the latest thinking.
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Old 02-29-2008, 04:43 PM #4
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I had to flunk a fair amount of tests to get my skin biopsy, once I actually got to a decent provider....and it took 10 years, at least of 'complaints' to finally get some one who actually thought I may be sick....this after a 55mph head on and a case of Lyme....Once I got to a decent provider, I had to flunk the tilt and the autonomic tests prior to getting skin biopsies. It was fine I had those tests as they would have done them anyway after the skin biopsies, to determine whether or not I had autonomic neuropathy, so either way, it was fine.

Also, they took 4 chunks of skin from me. I had to fork up skin at the ankle, the calf behind the knee, the inner thigh and the fore arm, which is the usual protocol, however, they can do other sites....including those glabrous ones we had a discussion about a while back. Below is the insurance take on what one needs to get the procedure, and pain due to suspected neuropathy, appears to be all these folks require. My insurance tends to want a bit more, like an arm and a leg....altho, I admit, they have paid for just about everything, so I can't complain....then again, I did have to go thru every algorithm (in circus terms, jump thru every hoop).

It is an interesting read, as they admit, SFN is grossly underdiagnosed. hmm....and that it may be cheaper to diagnose 'chronic pain patients' and get them out of the cycle of what they nicely infer as 'doc shopping' in different terms of course...oh and they also do admit, some neuropathy can be treated, altho they underplay the disabling effects it can have in some cases. Worth a read.

http://medpolicy.bluecrossca.com/pol...erve_test.html
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Old 02-29-2008, 05:10 PM #5
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Here is a bit more on the actual procedure....looks how much of you they want to skin depends on your doc.

http://www.medscape.com/viewarticle/563262_3
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Old 02-29-2008, 08:28 PM #6
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I had a nerve/muscle biopsy, but before I had it I had tons of blood tests....some showed I was low on L-Carnitine, Vitamin D, iron and B-12 and had LOTS of pain in my arms and legs and had every test imaginable that came back ok.......then I had the biopsy.
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Old 02-29-2008, 11:44 PM #7
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Default This is what happened..

Quote:
Originally Posted by dahlek View Post
There have to be other indications? I mean, a doc would NOT have done the biopsy w/o other factors pointing to justifying a biopsy being done?
Going Down Liza Janes' lists?
Nerve Conduction Studies, and Velocity Studies?
Immune blood and spinal work?
MRI's and CT's????
Spinal Testings
Cardiac tests and monitors
Sonos of leg vascular issues?
Bloodworks?
Glucose Testings?
IF all THESE were absolutely negative...I'd find a doc hard put to justify the billing to an insurance company...get my drift? There has GOT to be something in your records that said: DO THIS TEST....and you have to get copies of your records to find out for yourself.
And NO! I am not a doc, BUT I did get copies of my records and saw things there that the docs did NOT! And after a couple of years of trying, I'm still bugging them about this # and that #...I call it working out the 'bugs'. One bug at a time. And, a couple of my 'bugs' have turned out to be right. Sigh.
First you have to find [HOPE for all here!] a neuro you can communicate with, trust and think actually listens to you. Then you have to BUILD that relationship with the worst/key/primary issues/concerns. Then address the details bit by bit each visit. It takes quite a while. BUT keepat it and each issue will get it's time.
Michele? I have to believe that you probably have more things going on than the shooting/burning pains in the feet! I know as I've had them, now things are down after years to a 'being under a high-tension-wire' HUMM. It's enough thank you!

I do hope that both Glenntaj and BobB will respond to the whole small-fibre issue more articulately than I have done. I've both small and big. [Sigh again?] To me, they are the smartest experts in this quarter that I know!

's - j
This is what happened to me. Last Summer my new kitty cat scratched me on the top of my foot. About a week went by and it was very sore and hurt to walk on my foot. I went to the doctor and they lanced it. Not much puss came out of the sore, however 2 days later I could not walk on my feet. They both hurt like hell.
I went to my pcp and he said he didn't know what was wrong with my feet and why they are hurting. Meanwhile I am bawling my head off because it hurt. He said to me if you still hurt in a week come back and I'll give you a referal to a neurologist. I told him no, I need one now. In the meantime he gave me pain medicine to hold me over until I could see the neuro.
About 1 week later with this foot pain, my back went out. Now it was very difficult to walk because the feet and the back was hurting bad. I saw a pain specialist and he blocked a nerve, but that only lasted 12 hours of relief so that didn't work.
I had an MRI done of my neck & spine. In the meantime I am waiting for my neuro appt. So from the time the pain started I got to see the neuro about 5 weeks later. He did the nerve test. I am not sure what the name was. But, he put the needles and it would shock my muscles. He sais he got a little bit of nerve damage so he wanted me to get a punch biopsy done. I told him I had diabetes for about 10 years, didn't get serious with the disease until last year....... when I got my results back he said I got the neuropathy from my diabates.
My new neurologist just gave me a MRI of the spine, did some blood work, sending me to a gastro doctor because of my diareaha that I have had for 3 weeks and the wierd feeling I am feeling in my abdominal wal. I am also having sharp burning pains that are now shooting through my back, legs and arms, oh yea also my butt. Also going to find out if I have sleep apnea. But I don't have any tingiling, or numbness... just the burning sharp pain. Does this mean these things will come later? If I could have the numbness then the pain would go away, would that be right? This pain is the worst that I have ever felt and I can't stand it!!

Michele
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Old 03-01-2008, 07:42 AM #8
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Default Obviously, you had indicators--

--that meant you should be tested for small-fiber neuropathies--although you may have some larger fiber dysfunction as well.

The most typical presentation of diabetic neuropathy IS a gradual feeling of nerve pain in the extremities (though there are other presentations). The stereotypic "numbness" that one sees in movies/advertisements is actually less common. This is because the mecahnism of neuropathy in diabetes is ischemic/vasculitic--there's actually less DIRECT damage to the nerve themselves from high blood sugars than there is to the microcirculatory system that supports them. This is why symptoms occur in the smallest nerves first (the ones that subsume the sensations of pain and temperature) that are the farthest away from the centers of circulation; with circulatory damage it's harder to get nutrients/oxygen to the extremities and metabolic waste away from them, and the smallest nerves are the most vulnerable.

Here's a good article on the mechanisms of diabetic small-fiber neuropathy (Dr. Vinik is one of the world's leading researchers in the area):

http://www.medscape.com/viewarticle/418568

Now, it IS true that many doctors, when they see you are diabetic, will blame ALL future nerve disorders on that, and this is shortsighted. There are a lot of idiopathic small-fiber sufferers out there, in which autoimmune molecular mimicry mechanisms are suspected. Take a look at this (especially the section on painful axonal idiopathic neuropathy):

http://www.dcmsonline.org/jax-medici...uropathies.htm

There are plenty of people who have a predominant small-fiber syndrome that never progresses beyond the sensory symptoms of burning-type pain. It's been speculated that the pain actually represents a lesser degree of damage than numbness--pain means damaged nerve are still signalling, albeit incorrectly, and numbness means the actual fiber has for the most part been compressed/damaged to the point of cell death. (There are people who have both sensations in the same body area at once.)

One other thing--regenerating nerves can also be quite painful, as the growth cones fight through other tissues and attempt to re-link to their terminal sites--the brain often interprets the odd signals produced during the process as pain.
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Old 03-01-2008, 10:30 AM #9
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Default Thanks...

Quote:
Originally Posted by glenntaj View Post
--that meant you should be tested for small-fiber neuropathies--although you may have some larger fiber dysfunction as well.

The most typical presentation of diabetic neuropathy IS a gradual feeling of nerve pain in the extremities (though there are other presentations). The stereotypic "numbness" that one sees in movies/advertisements is actually less common. This is because the mecahnism of neuropathy in diabetes is ischemic/vasculitic--there's actually less DIRECT damage to the nerve themselves from high blood sugars than there is to the microcirculatory system that supports them. This is why symptoms occur in the smallest nerves first (the ones that subsume the sensations of pain and temperature) that are the farthest away from the centers of circulation; with circulatory damage it's harder to get nutrients/oxygen to the extremities and metabolic waste away from them, and the smallest nerves are the most vulnerable.

Here's a good article on the mechanisms of diabetic small-fiber neuropathy (Dr. Vinik is one of the world's leading researchers in the area):

http://www.medscape.com/viewarticle/418568

Now, it IS true that many doctors, when they see you are diabetic, will blame ALL future nerve disorders on that, and this is shortsighted. There are a lot of idiopathic small-fiber sufferers out there, in which autoimmune molecular mimicry mechanisms are suspected. Take a look at this (especially the section on painful axonal idiopathic neuropathy):

http://www.dcmsonline.org/jax-medici...uropathies.htm

There are plenty of people who have a predominant small-fiber syndrome that never progresses beyond the sensory symptoms of burning-type pain. It's been speculated that the pain actually represents a lesser degree of damage than numbness--pain means damaged nerve are still signalling, albeit incorrectly, and numbness means the actual fiber has for the most part been compressed/damaged to the point of cell death. (There are people who have both sensations in the same body area at once.)

One other thing--regenerating nerves can also be quite painful, as the growth cones fight through other tissues and attempt to re-link to their terminal sites--the brain often interprets the odd signals produced during the process as pain.
Thank you so much for the articles... I have printed these out for myself. How do you know so much about this?
I have been reading up on everything I can get my hands on regarding peripheral neuropathy. I want to make sure when I go to the neuropathy center in Jacksonville, will be somewhat knowledgable so they don't think they are dealing with an idiot. LOL

Thanks again Glenn,
Michele
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Old 03-01-2008, 10:39 AM #10
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This is a long shot and I would think your doc did test you for this. Most of the rarer sequela do not appear neurological except for transverse myelitis....there is also that osteomyelitis possibility...Like I said this is a long shot, but animal bites and scratches, with symptoms developing afterwards, are always suspect. You indicated that you had an infection and I wonder if they cultured the wound for any organism?

http://www.emedicine.com/emerg/topic84.htm

Glenn is utterly correct when he says that a lot of SFN never progresses past burning sensations in the feet, and hopefully, the disease process will stop and begin to reverse.
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