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#11 | ||
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Senior Member
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Thanks and thanks .j you have poiting this out before and now once again
I will read. Meg i hpoe you have some better lack and blessings. Glen thamks agin Bob is right can't of said it better. C.yes j.'s comes up with so many good things to read and reread...Hugs Sue |
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"Thanks for this!" says: | Megan (01-14-2008) |
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#12 | |||
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Magnate
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Back on the IENF density test....I have more questions if that is possible.
Well, glabrous skin isn't that obscure...seems to me, a logical next step in my case. Seems to me, they should take those if you present with dysautonomia and SFN, not to mention a fair number of those glabrous sites they mentioned have burned in my case....I say burned or hurt...in the past tense. No more pain there...probably as there are few fibers and therefore, little or no pain. I still have some questions as to how CIDP gets differentiated from other neuropathy, given you have low IENFs, and normal evoked potentials. Is the evoked potential, or SNAP the critical diagnostic criteria for CIDP? Watch in a year or two I will get diagnosed as a flaming diabetic...overnight. I didn't know there were 30 kinds of CMT! If glabrous skin has low IENFs it seems to me, that would be a definitive test for hereditary neuropathies. Is that reasoning correct? The article below has a link that does not work, to the charts of CMTs. I was told I did NOT have CMT, (well, at the time it was thought I did not have CMT) nor CIDP, yet my IENFs are abnormal with a tibial one of less than 2 fibers....(no wonder I don't feel much below the knee) That test was almost 4 years ago, and this hasn't gotten better. HMM. I have also had a tibial fracture for no good reason...stress fracture...which could have been due to poor proprioception and repetitive trauma....OR, vascular by my reasoning. I am thinking, neither CMT nor CIDP truly were ruled out, unless normal evoked potentials rules those entities out.... I also can not explain why my foot has more epidermal nerve fibers than my calf....which seems to me to be more genetic...yet my neuropathy is considered length dependent. Bicep biopsy indicates myopathy as well, mild, deemed 'likely neurogenic'. Does any one have any ideas here??? http://brain.oxfordjournals.org/cgi/...ull/128/5/1168 That CMT count, doesn't consider the hereditary 'myopathies' of which several are proving to actually be neurogenic, not myopathic. Again...HMMM Those I am not getting into on this forum, as that is a whole new can of worms. |
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#13 | ||
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Magnate
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--especially that second one, which indicates a clinical utility for skin biopsy in examining small myelinated fibers in non-hairy human skin.
In essence, it makes perfect sense to try to use skin biopsy wherever it can be used. The great advantages of the technique over nerve biopsy are that it is far less invasive and much easier to recover from, it can be used in the same area multiple times to track the extent of neuropathic damage, and it can access nerves--the smaller ones--that standard nerve conduction studies or electromyography cannot measure. But, in areas in which myelinated nerve bundles are accessible through skin--admittedly, these areas are few--it would make sense to access them through this less invasive technique (though one would have to go a little deeper, into the dermis, rather than epidermis, for myelinated nerve access). Doing this could conceivably shed new light on systemic neuropathies with a demyelinating component. Some ideas on what cycleops is musing over: Many neuropathies have both demyelinating and axonal degenerating components. There are many acquired neuropathies that are primarily demyelinating (sometimes with secondary axonal damage) or axonal. This group does not only include those of small fibers--many vasculitic neuropathies damage larger axons preferentially, resulting in mononeuropathy multiplex situations. And, it is common for predominantly small-fiber syndromes to have some large sensory fiber involvement (this happens often in diabetes, for example). But some acquired neuropathies, especially those that involved rogue monoclonal antibodies, and a number that are toxic (ethylene glycol comes to mind), degrade both myelin and axons. B12 deficiency results in both axonal and myelin damage. It seems as if a number of hereditary conditions may degrade both as well, and it may well be a chicken-egg question as to whether, in many of these (especially those with mitochondrial components) nerve loss causes muscle damage or the muscle breakdown results in de-enervation. I don't know if a loss of intraepidermal nerve fiber density in glaborous skin would be a DEFINITIVE indication of a mixed hereditary nerve disorder, such as some of the CMT variants, but it would be suggestive of a condition that attacks several different types of fibers (as opposed to one attacking only small fibers found in hairy skin). Remember, depending on the point of progression at which the test is done, one could be seeing axonal loss secondary to demyelination. CIDP is the "classic" demyelinating paradigm, and one would expect in advanced CIDP that skin biopsy of myelinated glaborous skin would show the characteristic "onion bulbing" and other damage. It's this, and the fact that the autoimmune attack is macrophage mediated, that earns the condition its diagnosis rather than the fact of reduced sensory nerve action potentials, slow latencies, or conduction block (which happen in a number of conditions): http://www.neuro.wustl.edu/NEUROMUSC...mdem.html#cidp |
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#14 | ||
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Magnate
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thread a bit...but in relation to Skin or Seural biopsies, there are a lot, repeat LOT of factors to consider, reconsider and then seriously consider before having one. The key aspects that made me balk at a seural biopsy were 1-it IS invasive surgery, resulting in permanent loss of any sensory feeling at the biopsy site [Me? I 'declined' the option as, I wanted some HOPE for restoration of any functions..not loss anywhere!] 2- any biopsy to assess nerve damages is only as good as the laboratory doing the examinations..plus the quality of the transport of that precious tissue to be examined 3-insurance company reluctance to adopt the punch biopsy as acceptable for any standards while at the same time declaring the seural biopsy obsolete and 'invasive'. Therefore one has to 'assume' that at this point, biopsies can only CONFIRM that and what nerve tissues and fibers have died....Thus only of value in conjunction with all other test results. The following site..if you go to it in depth...and it IS in GREAT depth will tell you that there are a variety of ways to diagnose CIDP and variants. http://www.cidpinfo.com/
I have mentioned this site before, but has anyone read it? It has been in the 'stickies' for a bit. This might be a shorter and easier 'version' to grasp: http://www.guideline.gov/summary/sum...10457&nbr=5480 Glenn? As for 'classic CIDP presentations'? I know of very very few who meet 'classic' in any shape or form...Those most meeting classic criteria are those initially diagnosed with GBS, and changed to CIDP diag. when it doesn't 'abate'...In my own case initially issues were wholly and totally sensory...uncommon. Testing for spinal and brain deterioration or damages were 'nil', The only clear criteria I met were the deteriorating nerve conduction studies, reflex and strong immune indications in the spinal tap studies. Once the whole 'complement' of testing was one, I found I'd 'achieved' 8 out of the 14 criteria [ten were key ones, I'd met 8 of 10 key] required for diagnosis by my insurance company. [Also mostly in the wustl..criteria as well] Note that the recommendation for biopsy is NOT a priority these days. With any neuropathy, be it autoimmune or not, the field of conditions to choose from is not just vast- it is HUGE. Key to it all is IF the physicians are really doing the appropriate key diagnostics to EXCLUDE all else. Yet, a majority do not even try, nor seem to care...I have to ask of us who have been thru the diagnostic food processor tho is...IS it up to US to voice concerns about doctors and attitudes? If so where can we constructively voice our concerns? It is apparent that the medical community is. for the most part, indifferent right now. Be it hereditary, immune, toxic, trauma, diabetic or the good old standby 'idiopathic', doctors are for the most part, 'in the dark' about the majority of PN issues. I guess I am just venting some of my own frustrations here, not only because of my PN issues, but for every single soul who has ever posted here. It's scary enuf stuff to deal with on your own...That so many docs are either indifferent or incapable of caring is truly beyond me-thus angers me, as it should others. Enough! - j ![]() |
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