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 :hug:

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!

:hug::hug:'s - j

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.

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

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

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.

This is what happened..
 

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 :hug:

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.

Thanks...
 

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 :hug:

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.

Skin Punch biopsy depends on the doc.
I had one done on the 2nd visit to my neuro at Johns Hopkins.
Not being a diabetic, I guess its part of the intake diagnostic procedure.
Mine was taken at 3 sites- ankle, calf & upper leg towards the hip.
A positive result of SFN - axonal, sensory, length dependent, polyneuropathy.
Good news/bad news.
Nerve regrowth is evident.
Nerve degeneration is faster than the regrowth.
Treatment?
Rx's for pain & symptoms, check-ups annually at first, as needed- later.
My PCP is also part of the Hopkins system (as well as all of my docs)
& she is the one that follows-up.

Well, I will 'ditto' the statement that nerve degeneration is faster (at least in small fiber neuropathy). That is not pessimism either....it is realism. I am going to get to swallow some fat tubes in the next few months....due to small fiber neuropathy. Num, num.

Can you please clarify? You had NO symptoms before the infected cat scratch?

Sorry about the link that doesn't work....I have a professional registration and I guess you can't just link....anyway, it refers to Cat Scratch Disease, Bartonella and a few other infections that cats pass on to humans, and some of them have neuro manifestations....

Again, I apologize for the link mess up. Darn, it was a good article...you may be able to bring it up on google.

I looked up things and thought
 

similarly Cycleops...but there is really very little connections. SOOO what my thinking is maybe... Michelle did you get a tetanus shot afterwards? Or have you had a cold or pneumonia rite before or after the cat's scratch? Do you know the cat's history? Was it a pound cat, stray or do you know the 'family' the kitten came from?
Pound cats are usually checked out for most common and many esoteric diseases that may be common to your area.
Tetanus shots can cause reactions- tho quite quite rare. Any pneumonia or getting a flu shot at the same time mite have 'started' something, but again, it's quite quite rare.
Something else does seem to be 'going on', and I can sense the distress in your writing. I've walked in similar shoes [can't wear those anymore]. What I would do is go to the stickies and read posts here about the diagnosis of various PNs...and especially the diabetic and auto-immune aspects...Not to scare you, mind you! Not at all! Just to give you a handle on what kinds of testing should be done, and how docs normally do them [aside from glacially slowly-especially when numbness is marching thru your body]. Remember that stress with neuropathies is a rampant issue. Also, that eliminating soo ever many things is the key to neuropathy diagnoses. And, DUH? Who wouldn't be stressed out? Thing to do is read, learn figgure out things in your life that could add or not to this big problem and sort it all out in your mind. Tho far easier said than done. Be sure to get copies of all your tests and med records as you can get them! They will be invaluable to understanding things in the long run...[MRI's for example, come with summary sheets for the docs, sometimes you can get copies thru the doc offices, but others you have to go to the MRI places]
Bet you still have that cat! :hug:'s - j

mrsd
 

Are you talking about cat scratch fever,if i'm way off i'm sorry,
My Grand Mother rescued cats. She was strached in the pass,no problem.
She was strached on the arm,her neighbor went to visit her arm was
swollen,her temp.104,they rushed her to the hospital..She was a strong
woman,but she screamed and no matter what they gave her,nothing
helped pain was unbearable..She was in her 90's and they were her family,
but they were not sure she would live. I heard of it,never saw it before never
want to again. She made it ,but removed the cats,the .dr.was so upset.
Well the cats well you don't want to know. He gave her a kittten no claws.
He was shook,she kept this one in the house..She was in the hospital
for a while,went home,she always had pain,but wasn't going to get rid of
the kitten...Her arm was so huge ,red streaks very swollen..:eek: Sue

It is with all
 

neuropathies...either connected or not at all. I believe that all of us in our trying to understand what we have, and learning about what we might have - well we have probably expended enough energy to power a mid-sized city at times!
Not to mention the 'energy' expended in the whole pain process?
I for one have found that the trying to SIT and read medical papers and learn as much as possible about what I might have, well, can and DOES divert my whole self from the pain and new pains and different pains. I have found that the understanding helps me understand what is going on and when, and at times what to do about it all. Not always, but, often. I have also found that folks here have helped me thru it all. A LOT!
I do know that many have experienced what I have at times...that is, the consideration that really drastic [I mean drastic] measures might make it stop. My reading and learning has told me that drastic doesn't change the key nerve problems and what has caused them-from those who have chosen such routes. I do seriously respect those folks for not only trying, but sharing their outcomes, both pro and con.

I just fear Michelle that you mite have gotten a bacteria, parasite or virus from that dear creature/catliness that you really didn't need, and well, YOU might need the CAT to find out what you both have that's unpleasant in common? Honestly, you might get more lucky asking your vet! Vets are very keen on keeping such issues OUT of all our lives. Ask the vet to test the cat for the key bacteria, viruses or parasites that might 'connect' to your issues, and then YOU don't/won't have to go thru the plethora of tests of could-be's...as the vet can rule out cat could-be's and zero in to the 'ares'. Get vet to call doc and IF doc listens you could be home free? I sure hope! But that's the way I'd play it!

BTW I live in a West Nile/Lymes and other ilk area... I know many who have the 'iffy' diagnoses for those. I know I am clear of those issues 'ostensibly' but I for one will not rule them out. I know I've been exposed to it all for years and realize how these diseases can overlap with what I probably have.
I know that WN and Lymes are not what I have...too many connections to other stuffs. So, keep searching, be prepared to be confused, and then ask for help when you need it-BUT make your own decision. :hug:'s - j

I can't get the text of this article...but the title is kinda odd.

http://www.springerlink.com/content/q3286742tqw450k3/

I hope this one goes thru....might be worth looking at. I do not know if it is the same kind of Bartonella. This is a big problem with NOT culturing wounds.

At minimum, it sounds like a cellulitis may have been possible, and an autoimmune problem ensued. Then again, with diabetes, for is it 10 years? (if memory serves me correctly) It could be small fiber neuropathy.

Also, I had small fiber neuropathy for probably a decade before I figured out what was going on, because, I had no reason to even remotely consider that I could have small fiber neuropathy. My feet never really 'burned'. I had no concept that issues all over my body were related to small fiber neuropathy. (For example, I had no concept I was globally anhidrotic).

I agree if that cat is around, I would have him/her tested for all kinds of organisms. That said, what was on kitty's claw, may be long gone...and it is possible that kitty had no part in it at all.

I found the text---read this.

http://www.canlyme.com/bartonella_vasculitis.html

The only symptom was...
 

The only thing I had was just pain in my heels before the cat scratch, but I didn't think nothing of it. It wasn't bad pain, just a little bothersome. After they lanced the cat scratch is when the pain came on both feet.

Thanks,
Michele :hug:

Tested For....
 

They did test me for cat scratch but they ruled that out. I didn't have much puss, but I was on antibiodics and that cleared it up, but my healing takes longer cause of the diabetes.

The report came back as polyneuropathy and this is what the doctor assumed that I got this from diabetes. I of course gave him my history with the diabetes... I never took care of myself until last year, so I guess I did do at least 9 years of damage to my nerves.

You don't know how bad I wish I had the SFN and it would reverse itself. But I am pretty sure this was caused by diabetes and the damage is done. :mad:

Thanks,
Michele :hug:

Bet you are right....
 

Yes, I still have tha cute cat!! :eek: He was a baby when I got him, he was the cutest persian I ever did see. A friend of mine sells Persians and that's where I got him from. But I did get a cat scratch test done after he did that, lyme disease and a few other blood samples, but nothing. I didn't get sick from my cat when he did this, but I did get a booster after it happened just in case

I have noticed when I get stressed the pain comes back on me at full force. Now I am getting shooting pains that go down my back, in my butt, down my arms and wierd pains in my stomach walls. I don't know what the heck is going on there. I have had diareah for 3 weeks now.......... Augh I feel lke such a painful hot mess.

Is it me, or does anyone think, why me? Should I not be out of that stage already? I know my antidepressant isn't strong enough because I cry everyday about this and when I get the pain, its two-fold.

Thanks,
Michele :hug:

Another idea
 

Diarrea for that long isn't a sign of diabetic neuropathy. Have you seen a GI specialist? You need to be seen by a doctor that specializes in problems with the stomach, colon and the intestinal tract. Have you been tested for gluten sensitivity? Problems with gluten can cause neuropathy too. We have a wonderful gluten forum here at Neurotalk. http://neurotalk.psychcentral.com/forum13.html

Getting your sugars under control and taking good care of yourself with diet and exercise (properly done with a physical therapist) can sometimes cause healing of the nerves. One of our faithful members...Brian...had pre-diabetes and has actually healed with his diet and supplements being carefully watched. It would be to your advantage to read the stickies at the top of the forum. http://neurotalk.psychcentral.com/thread177.html

I know you are depressed over what has happened. You don't say how old you are. I have small fiber sensory neuropathy, axonal neuropathy, and some autonomic neuropathy. It burns, cramps, squeezes, makes my back feel like it's breaking, and bones are actually breaking. But by fighting back, I've managed to start driving again, yesterday I had lunch with 5 women I worked with for about 15 years, shopped to buy myself a new hat. And today, we looked at new cars. I drove three of them. That's hard work. Walking around parking lots to look at cars. I've only been off crutches for a couple of weeks. I broke my ankle, thoracic spine, multiple breaks in my sacrum, 3 breaks in my pelvic bones. All at the same time with maybe a couple of months between the worse breaks. Did I cry? You betcha Lone Ranger. But I refuse to stay down. After the initial shock of finding out that all of that pain was caused by more breaks, I started fighting back. Oh and I forgot to mention, these breaks were on top of the neuropathies.

I'm going to buy a new car. Mine isn't safe for me to leave town in. Not dependable any more. And I want to leave town in order to shop for the supplies I use in my jewelry business. Yes, I have a jewelry business. And it is growing. Sometimes I can't feel my hands and picking up the little pieces to do the work is difficult. Sometimes they hurt so badly that I can't use the tools I need. But I refuse to quit.

You can overcome the depression. Strong emotions are a killer for neuropathy. Get plenty of good food. Take vitamins and supplements. Take your B12. Watch those sugars. Get out and see people even if you have to do it in a wheelchair. Get your doctor to order physical therapy for you. Some people benefit by using a ReBuilder. There are threads on here about using one.

And if you need to rant, cry, or even celebrate something good, we are all here for you.

Billye

Thanks for posting this link. I found it quite succinct & informative. ....Why is it that a policy from an insurance company is more informative than my neuro! :)

Best Wishes
Steve

....just a footnote to my previous post.
As a new member I cannot yet post links, so I could not "quote" the link in my response.

Best Wishes
Steve

My knowledge of neuropathy--
 

--just comes from the hard-won expereince of having had a most unusual presentation (a full-body acute onset burning syndrome) that led me to do an enormous amount of research and compile a large database, much of which is available through links here and at some other boards (the Internet is a wonderful thing for those of us with weird health problems).

Yes, diabetes is the most common cause of neuropathy, such that if one has nerve symptoms, especially painful small fiber ones, most doctors are ready to attribute all of them to imparied glucose regulation. But it's certainly possible that you had a "smoldering" neuropathy for a long time due to diabetes that was greatly exacerbated by the infection--which would have put your immune system into overdrive, and there are plenty of immune mediated neuropathies--or even from the antibiotics (neuropathy is not an uncommon side effect from some of the more powerful ones, such as Flagyl).

There is a situation known as the "double crush phenomenon", which basically means that one may have something assaulting the nerves that causes no or minimal symptoms, but if another neurotoxic situation is added, one may trip over into major symptoms--the two assaults are just too much for the nerves. This often happens, for example, when diabetics get additonal compressive forces on nerves and develop carpal tunnel (or tarsal tunnel), or, as in my case, already damaged nerves became more prone to spinal arthritis radiculopathy (inflammation of nerve roots near the spine).

See:

http://www.emedicine.com/orthoped/by...l-syndrome.htm

http://www.emedicine.com/pmr/topic21.htm

http://www.chiroweb.com/archives/14/09/04.html

http://www.ncbi.nlm.nih.gov/sites/en...indexed=google

antibiotics?
 

Do you recall what antibiotic you were given and for how long?

Some drugs cause neuropathy.

It doesn't have to be a "cat" pathogen you had. It could have been plain old
staph aureus which many people have living on their skin daily.

I would not wish SFN on anyone.

Small fiber neuropathy=polyneuropathy. It is very seldom reverses. I don't have diabetes, but I have small fiber neuropathy, which is polyneuropathy, because it affects more than 'one' major nerve, and I have sensory, motor and autonomic forms of it. I don't have diabetes, I have exactly the result of what happens to a diabetic, either due to my genetics or due to an anterior horn cell disease.

"Small" fiber does not imply a small problem, not just feet. I can suggest researching autonmic neuropathy to get a good idea of what small fiber neuropathy can involve, not to mention sensory and motor neuropathies.

Small fiber neuropathy develops in many diabetics and diabetes is the number one cause of small fiber neuropathy. 25% of people with small fiber neuropathy, or polyneuropathy, have no apparent reason for it, and of those 42% are thought to have untreatable hereditary PN, and the other 16% are thought to be Celiacs.

Polyneuropathy simply means more than one nerve is involved as opposed to mononeuropathy. It makes no implication on the kind of fibers involved.

Sfn
 

I wouldn't wish SFN on anyone either. This pain is the worst that I have ever in my life have expierenced. I will be 41 in about 11 days. I know I feel like a baby when this pain comes on, but I can not help it. I have such a low tolerance for pain.

It's possible that I could have gotten something from my cat and the kitty litter when he scratched me. I don't know..... but I guess when you have diabetes and you didn't take care of your sugars for almost 10 years, then you are right the doctor will say it's from the diabetes.

All I know is the test came back as small fiber polyneuropathy and when my feet hurt, it hurts like hell.

I thank all of you for letting me vent and talking. It helps.

Thanks,
Michele :hug:

Antibiodic
 

I don't remember what antibiodic I was given. I know I took it for about 10 days, if that.

Thanks,
Michele :hug: