Another question...
 

If I may.
Okay, so I'm trying to educate myself more on this SFN. I just read an article from Johns Hopkins that said weakness and balance problems are associated with polyneuropathy, but not small fiber neuropathy.
I have both balance problems and muscle weakness, but my dx is SFN.
Can anyone explain this? Are they really different neuropathies? Is it possible my dx is wrong? Does it really make a difference?
Thanks in advance.
dmouse

It is hard enough to just ....
 

understand 'neuropathy' let alone all it means?
Thing that makes it more confusing is that EACH one of us has gotten 'it' in different ways.
Re-read this from the 'stickies' carefully... and slowly so as to asorb it.
http://www.aafp.org/afp/980215ap/poncelet.html
It discusses some of the different causes, and also emphasises how varied and different onset, and effects can be. Even tho this is a ten-year old paper, it's clear enuf for us mere patients/sufferers to understand.

This one is a bit more technical, but can cover the gamut as well...
http://emedicine.medscape.com/article/1171051-overview

Then, it's up to you to sift thru the different 'stickies' and decide which one fits you best? This site is extensive but gives a thumbnail sketch of the hundreds of different types.
http://neuromuscular.wustl.edu/alfindex.htm
Basically there are four types of neuropathies: Inherited, acquired [immune triggered- heart attacks, diabetic] , toxic [poisons, alchohol], and traumatic [spinal or other bodily injuries that affect/effect the nervous system]. Many combine #'s 2&3 into one of acquired with subsets...

As for SFN balance and weakness issues? Have you been less active than before? As in a LOT less? I ask as my own initial of SFN was the result of a 2-day hospital stay after which I could barely walk! Being in that bed for 2+ days let me vegetate totally and things went from there to worse after several months home.

If it were me, and based on my own first [now EX] neuro's assesment, I would go get a second opinion ASAP. That means honestly at least 2 months wait? But if you are available for a cancellation at the drop of a hat? It could be well worth it. Also if your GP could put in a good word as well? That helps heaps in getting you seen asap.

Nerve damage at first, isn't what the long term damages could be. A nerve conduction study done within the first 4-8 weeks from a sudden or any onset will likely change after about 6 months, IF it is going to be deteriorating at all. A good neuro should monitor at varied intervals for changes in the conduction studies....

I can't say whether your SFN diagnosis is right or wrong. I can only say, that based on my own experiences the numbness progressed...agressively up my limbs and the first [now-EX] neuro did not do additional testing -some of it quite simple to eliminate other possibilities. Obtaining other neuro opinions clearly indicated that some 'other possibilities' were happening and while treatments are limited? The best treatments I can obtain are being obtained. Each doctor has their own opinions and they are usually based on their past training..if what you present [to them] is within those training parameters they aren't gonna be what I call 'curious' and look any further. Neuros who've seen more of the odder neuropathies will test.

Honestly tho? Treatments are limited for neuropathies - the 'menu' of meds tried for most are posted in the 'stickies' somewhere... It is a VERY GOOD list. Each of us is different and once thoroughly tested to eliminate the worst of PN issues, we just have to go with what we have. Wish it were different but not much has changed in the 6 years since I got this stuff, I am very sad to say. Well, at least I can still type! Tho not as fast as in the past! Sigh? :hug:'s and hope! - j

Thanks again for your input. Thanks for the links too! I'll have to print this stuff out, only way I can retain any of it. I've been reading, but not grasping.
Guess I'm a bit impatient!
I have to wait for insurance to get a second opinion. My only option is Cleveland Clinic... that's who my neuro is with. Oh well, take it as it comes!

Generally, a neuropathy that is limited to small fibers--
 

--will not affect balance per se, as that is controlled by larger fibers. All motor neurons are also larger, myelinated ones, so muscle weakness is not generally associated with it either.

That having been said, though, many people have mixed types, in which both small and large fibers have some damage. Also, as dahlek points out, if you have small-fiber symptoms of pain and numbness, moving is going to become more difficult (you may not feel up to doing it as much) and lack of exercise may result in muscle weakness and balance difficulty (especially if there's numbness). It's part of the reason why most of us would say one with small-fiber neuropathy (indeed, any neuropathy) should exercise to the limits of his/her tolerance--lack of physical activity only tends to make things worse.

Sophisticated neurological testing (EMG/NCV, manual mucle testing) should be able to distinguish between muscle deterioration that is caused by de-enervation and that which is caused by lack of exercise. People who are bed-ridden or otherwise incapacitated are hard to tell from people with de-enervation without such testing. Balance is a bit easier to test--but people with balance problems may have cerebellular, sinus, or semicircular canal issues that have little to do with neuropathy.

Thanks again. I meant to post yesterday that my activity level is actually up since I lost my desk job last Feb. (wanted to get back to the Super Bowl!)
I'm home taking care of the house, dog, cat and grand-daughter, plus, I've mentioned this in other posts, my hubby's a musician and at the very least, I'm out dancing every other weekend but usually its every weekend. I dance almost every song, so I'm moving 3 - 4 hours those nights, barely sitting down plus helping him load gear in and out. For the record, before its asked - I'm the designated driver, so not a lot of alcohol.

The balance thing may not be very relevant, it could just be caused by lack of sensation in my feet and ankles - I do notice that I trip on them once in a while. I was just wondering. I just recall during my exam when he asked me to stand there with my eyes closed, I kept falling to the right. ENT I just saw said my ears and sinuses were fine.

Again, it's mostly just wondering, trying to connect the dots with whatever is wrong with me. If I can narrow down symptoms to causes, it may help understand what is actually to root cause of it all. I'm so close to a true diagnosis, but still so far away. Gets a little frustrating.

Thanks again for taking time to answer, and for being patient with me!

I was actually dx'd with SFN, not PN. And no, I'm not totally sure.

My neuro tells me I do based of the QSART results and punch biopsies. I do have most of the symptoms, but, as I'm learning, it effects us all differently. I'm a graphic designer, and my symptoms are worst when I've been "under the gun" with deadlines and hammering away at the keyboard, or scrubbing floors etc, or out shopping for more than an hour (tires me out terribly). I never said the dancing didn't effect me, just that I do it. I'm a total sop for at least 2 days after. I'm a firm believer in "use it or lose it".
My "story" is in the post "How did it progress over the long term"

I'm also a tough 'ole irish woman and mother of 3, grandmother of 1, with a rather high tolerance to pain, and when it does hurt, I try to ignore it and push through it because I must.

Sfn--
 

--is PN.

"Small-fiber neuropathy" is just one of many kinds of "peripheral neuropathy", which just means disruption of any nerves beyond the central nervous system (brain and spinal cord).

I do agree, though, that if you can tolerate that much dancing, you probably don't have much in the way of larger-fiber involvement (at least not yet, and hopefully it'll stay that way).

My mistake. The way I understood it was the SFN involved only the unmyelinated small fibers while PN involved the myelinated long fibers. My EMG showed no long fiber involvement.

Guess since I don't seem to "have it as bad" as most of you, I should stop concerning myself with it.

I'll apologize now for any sarcasim in my posts. I'm just extremely frustrated.

I've had health problems for years. In 1987, I miscarried my second child. In 1988, I had to have lung surgery because my lung collapsed 4x in 3 months. In 1990, I almost lost my second child to SIDS, my 3rd and last child I almost miscarried. (Both were born premature - 8th month). I've had 2 TIAs, 1 each during last 2 pregnancies.
I have had pain in my hands for at least the last 9 years. I suffer with migrains. I have scar tissue in my lungs from many, many bouts with pnuemonia starting at 3 yrs old. I have nodules on my thyroid, but no antibodies as a cause. Pain in the general area of my liver or gallbladder with no apperant cause. I now discover I also have a cyst on my liver that wasn't there when the pain started. I have thickening of my esophagus. I have skin discolorations and severe itching. I have pain in my sacrum, that no one can explain. Mild OA in my lumbar region. I trip over nothing, almost as if the floor jumped up to trip me. I have poor muscle control of my hands and I drop things, and struggle to make them type. My BP is low, which causes dizziness.

I have had several CT scans, a heart cath, EMG, HIDA scan, barium swallows, many x-rays of painful joints, tons of vials of blood drawn, urine tests, PFTs. I've seen Rheumatologists, a Scleroderma Specialist, Gastro, Neuro, Endo, Pulmonary...

And no one can tell me what is wrong with me. All they say is it's a symptom of something unknown.

And I'm tired of everyone looking at me as if I have 2 heads. Or thinking (and you see it in their eyes and hear it in their voice) that I'm a hypochondric, looking for attention.

And getting that same reaction from someone who has been there...
It's very discouraging.

If you're referring to me, I did not mean to be sarcastic--
 

--I mainly meant to be very specific in defining terms, which is not only very important with doctors, but important for places such as this one in order to get optimum communication and advice.

And this is not to say that small-fiber neuropathy is a minor thing. Symptomatically it can be horrible. The problem is that many neurologists see normal EMG/NCV's and a lack of other abnormal tests and can be dismissive, as they can't "see" pain and numbness. But those are very debilitating in their own right.

This is why I often recommend a skin biopsy for people with these symptoms--it can often unequivocally document that people have an actual condition.

And, I'm glad that you can tolerate that much dancing (I can tolerate a considerble amount of exercise myself), in that it means at least the condition has not yet spread. It is not uncommon, unfortunately, for a syndrome that starts out with small-fiber disruption to show some spread to the large fibers over time. But this is not universal, and I hope it never happens to you.

Believe me, nobody here thinks you're hypochondriacal.

The other health situations you describe may be related to the TIA's--how far have they gone in imaging your brain? There may also be an unknown autoimmune process going on--have you been titired up for autoantibody types beyond the ANA subtypes (anti-reticulin, anti-endomyesial, anti-nerve, etc., etc.--just take a look at this list for a start):

http://en.wikipedia.org/wiki/Autoantibody

The Liza Jane spreadsheets are also a good place to look at these kinds of tests (it was put together to try to get as exhaustive a list of tests for neural symptoms as possible):

www.lizajane.org

dmouse,
No one here thinks you are inagining your problems, nor will they think you are looking for attention.
Many of us have been told its 'in your head' and many of us have fired our docs for not having empathy towards us. I've fired almost a half dozen in 4 years.
Finding a doc that will work with you and understands your needs and problems is paramount.
Getting proper testing and a definitive diagnoses is too.
Glen's suggestion of the skin punch biopsy is a wise one. Not many places do it, and not many neuros can interpret the results properly. But it is the 'gold standard' for definitive diagnoses of small fiber neuropathy.
Mine was done at Johns Hopkins.
I think that the Jack Miller Center & Cornell-Weill, also do it.
Hopkins has a kit for sending back to them, if you cannot find a center near you, that does it properly.

Are you sure you have PN?
I can't think of anyone on these boards
who can do even 1/10th of what you describe.
This is the comment that "upset" me. My interpretation of that comment was the same 'ole "But you don't look sick" that I've gotten from everyone for the last 7 or more years.

I did have punch biopsies done at my ankle, above the knee and the upper thigh. I don't have those results yet. (Have to deal with a not so nice nurse to get them). I do have the QSART results. It reads: QSART responses at the left forearm and foot are recuced. These findings are nonspecific for etiology but are consistent with a postganglionic symapthetic abnormality like that seen in autonimic/small fiber neuropathy.
My neurologist is Dr. Chemali at the Cleveland Clinic Main Campus. His specialties are autonomic nervous system disorders, complex regional pain syndrome (reflex sympathetic dystrophy), painful peripheral neuropathies and music therapy.
This is a list of all the tests he ordered:
ANA Blood Lab; Anti ENA Id Lab; CBC + Auto Diff Lab; C-Reactive Protein (CRP) Lab; Comp Metabolic Panel Lab; Cryoglobulin Qual Bl Lab; Glucose Tolerance 2H Lab; Hiv Ab 1&2 Screen Lab; Hep Remote Panel Bl Lab; Monoclonal Prot Bld Lab; Rheumatoid Factor Bl Lab; Sed Rate Lab; Vitamin B12 Blood Lab; Monoclonal Prot Ur Lab; ParaneoplasT Autoabs Lab; Microsomal Ab Bld Lab; Lipid Panel Basic

Emg(Neuro/Ni) Procedures
Neuromuscular Health Status Other
Neuro Cardio Autonomic Reflex W/Wo Tilt Procedures
Neuro Qsart Procedures
Skin Biopsy For Neuropathy/CNL Procedures

I just downloaded her spreadsheets yesterday, and I've posted photos of my skin in other forums specific to autoimmune to see if anyone may have a clue as to what direction I should pursue. I'm pretty sure it is Autoimmune - it's just trying to find which one. My ANA was negative until 2005 so there is a good chance any of the sub-types may not show up for years.

The TIAs were during pregnacies (1990/1992) so no scans of any kind done at the time. I just had a CT of the head about 2 weeks ago and it was normal. The neuro I saw at the time said it was most likely caused by the elevated estrogen from being pregnant and the migraines I suffer, and I haven't had one since. I'm a progesterone dominant and don't tolerate estrogen well.

Having no insurance, and being unemployed, I can get financial aid from the Cleveland Clinic, but only for "medically neccessary" appointments. That said, I can't just walk into my docs office and ask for a lot of these tests. Not until I can point him in a direction. (He's a fantastic primary) We make too much money to qualify for state aid.

I was apologizing for MY sarcasim that may show up in my posts. I am VERY frustrated with this whole process. When I went to the neuro in December, I was convinced he was going to tell me it was my thyroid. Take this pill the rest of your life and it'll fix you. And it's not my thyroid and we STILL don't know why and he wanted to start me on an expensive therapy right away which scared the heck out of me. Until I found this place.

Thanks for the explanations. I'm trying to wade through this all, live with it and raise a 3yr old granddaughter. Not always an eay thing to do.

nide44, just so you're aware, I'm not upset with you about that remark, just at the remark itself. And, I'd rather let people know when something has upset me then stew about it and harbor resentments. Deal with it and move on...

I understand that we all have different aspects of this, and different things going on, and different ways of handling things. I've been reading the posts, and all the info I can, and you are absolutely right, mine isn't nearly as bad as most of you here. My goal is to keep it that way! And I can't if the docs can't find the root cause of all of this. So, I question, I ponder, I worry.

Thanks for your replys, and I hope you are feeling well!

OK--it does seem--
 

--as if they're scratching beneath the surface with the tests that were ordered; good to see they've included many of the autoantibodies (though there might still be more to investigate if these come up negative) and that they're doing the tests for monoclonal antibodies, which are found in a number of blood conditions and often cross-react to produce neuropathy. (These are not technically autoantibodies, but they often work the same way on nerves. (If they find them further investigations into your blood cell types would be in order, just to rule out various blood dyscrasias.)

I understand how lack of insurance is a big worry and barrier (one of the reasons another subject I write about is the need for universal health care in the US, and I would prefer a single-payer type system possibly modelled on the Veterans administration, in whcih there are payment incentives for prevention and cure, not just for each service/test rendered). It may preclude some of the more advanced testing now (though I hope the Cleveland Clinic works with you here if it's needed). That's the shame, though--neural problems often do take considerable time and expense to sort out causes for, as there are so many systemic and non-systemic possibilites.

DO push to get all those results back (not-so-nice nurse or not, you're entitled to them--it's your body) and do post any relevant results, as you did with the QSART; there are a lot of people here who are very good at interpretation and may help you formulate questions and avenues of further investigation.

Well, I broke down and called my neuro's nurse today. I got her voice mail. Did leave a nice message, thanking her for sending the other reports and all and asking "If you have any time this week, would it be possible to send the biopsy reports?" I should know in 2-4 days.

I'm being diligent in watching for cancers. Dad's father and several uncles had different cancers. My mom has CLL and is a breast cancer survivor, her grandmother had stomach cancer. I have a repeat US of my thyroid in July to make sure the nodule isn't growing.

Noticing the "pins and needles" in the bottoms of my feet the last 2 days, hoping it's temporary. It's hard to tell what may be caused by the OA, and what is the SFN. Also have developed more of these mysterious rashes the last 2 days.

I'm getting to the point that even a dx of cancer is preferable to not knowing anything!

Thanks for the input!