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#21 | ||
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Magnate
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My understanding, which is pretty much yours and Silverlady's, is that the sural nerve biopsy would reveal the aspects of the disease that make up CIDP, which is primarily a clinical diagnosis. That is, it would reveal that the neuropathy is primarily demyelinating--usually, that is revealed through examining the remaining myelin for damage from immune complexes and cell infiltrates, resulting in inflammation (and, of course, finding a lack of myelin, or damaged myelin, is also a big tip off)--and for evidence of a relapsing/remitting pattern, meaning attempts at remyelination (this often leads a characteristic myelin pattern known as "onion bulbing" around the cells).
On the other hand, the sural nerve biopsy itself is not likely to reveal the original cause of the CIDP, just the syndrome/process. Specific antibodies are unlikely to be identified this way (and are just as likely to show up in blood testing--which is to say, not often). A sural nerve biopsy has much higher yield in autoimmune neuropathies that are primarily axonal in nature. This are more likely to be asymmetric and to have vasculitic components--often, these involve variants of the anti-nuclear antibody. A sural nerve biopsy wouldn't seem indicated for Alan, as it wouldn't alter his treatment. And yes, while there are some who've had sural nerve biopsies and come through with no permanent damage, it's a tricky procedure, best performed by a well-trained surgeon--there are plenty of people who've experienced permanent pain or numbness in the area afterwards. See: http://www.neuro.wustl.edu/neuromusc...mdem.html#cidp http://www.neuro.wustl.edu/neuromusc...dy/pnimax.html And the section Silverlady listed from this site is also a good explanation of the circumstances under which a nerve biopsy would be indicated. |
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#22 | |||
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Wise Elder
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Ah, my dear Glenntaj:
I do love the way you talk. lol And thanks everybody (Rose, Billye) for all the info on the Sural Nerve biopsy. I shall print it out and show Alan. If he still wants to get one, he'll have to do it in the middle of the night without me. And that aint about to happen. Thanks much Mel
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. CONSUMER REPORTER SPROUT-LADY . |
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#23 | ||
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Member
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All this good info...I heard somewhere that the sural nerve biopsy was outdated but for what reason I have no idea....no help here. NOW i am confused....I specifically asked if I was getting "small fiber biopsy" is that different from "punch biopsy"? I can't remember which doctor told me it would be the small fiber one but is that the same thing????? I had the EMG and NCS and the were normal of course. Negative for Myathanis gravis. So what about this arm fatigue. Darn it. I don't really notice much pain till I go to bed. My feet have been burning and nasty feeling for years, but has not spread and they say it is not "neuropathy". I always seem to have too many sx for anyone to handle. Well I can't either but I want to try to figure it out. Darn, I have insurance, are docs just giving up ???????? Today my left hand was tingling then my thumb started twithching for a few minutes .....now what. I had a bad pain attack in left arm last fall all the way from first 3 fingers to side of head, said its not TOS< no answer on that either. My right hand is in a splint so I think the overuse of left is causing pain and sx from the original thing that happened whatever it was. Pain lasted a few weeks then finally subsided...flared up if slept on but now kiinda gone except the hand pain now....and the tingles today...
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#24 | ||
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Senior Member
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The skin punch you are getting is a small fibre biopsy from the surface of the skin, the sural nerve biopsy is more invasive, this site should help you.
http://www.hopkinsmedicine.org/media...europathy.html |
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#25 | |||
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Senior Member
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Lailavia,
Has anyone done an MRI or any other work up on your neck, the cervical part of your spine? Some of the symptoms you are describing can be caused by problems in your cervical spine. Even the feet can be affected by this. Here's a site with some basic info that might help you understand. http://www.spine-surgery.com/53_259_...4331434435.htm Billye |
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#26 | |||
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Member
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I had a sural nerve biopsy done. It is not a lot of fun, but my foot is fine now, except is it somewhat numb on the side.
I would avoid having one if you can, especially if you are having foot problems involving healing... Cathie |
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#27 | ||
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Member
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Yes I have had one very recently, nothing on there that seemed to concern anyone. Had emg, ncs, myasthenis gravis bloodwork, lyme tests up the wazoo, sed rate, ana antibodies, RA factor, you name it. Mri of l spine, I do have some probs there, with legs, sighs....well I get it about the biopsy now. At least maybe they will do something else if it is positive. I hope. If there is even anything to be done? What could they do about arm and leg fatigue. I could live with it I just want to know WHAT it is called. I want a Name for it. I'm tired of being a blob of unnamed symptoms!!!!! Though I am realizing more and more that that is what they all want to say!!!!! Plus maybe the tilt table will help figure out something....I found out more about that it can actually show lots of stuff......so lets hope Something shows up this day of tests. I went to their web site and learned alot about it....though have had before...
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#28 | |||
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Member
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Frustrating, isn't it? A lot of us are in or have been in similar situations.
Early on in all of this, a lot of my blood work was run through Immunosciences Lab in California. I am absolutely zero in the know on these specialized tests, but they were different than your normally run labs. They used Elisa testing (no clue) and a lot of autoantibodies showed up with this, that did not show up in conventional testing... For example: autoantibodies to Myelin Basic Protein and also Striated and Smooth muscles... Trouble is, I took the tests on to other doctors who had never seen testing like this and did not seem to know how to treat the results, since the AB to Myelin Basic Protein were in peripheral blood, rather than spinal fluid... I hope you get some answers. Cathie |
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#29 | |||
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Wise Elder
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Cathie:
' Isn't it absolutely amazing the knowledge base of the people with PN on these boards?? They seem to know lots more than their own physicians. So what does a person do when they know more than their own doctor?, when they bring a test to the doctor, and show him results and the doctor is clueless? I mean, how are we supposed to get help for our PN if the doctor's aren't up to speed. We ought to go on 20/20 and do a segment on what the people with PN know versus what their physicians know. That'll get somebody crackin!!! Mel P.S. I'm still getting over the fact that none of my doctors (and I mean none), know anything about the importance of Methyl B-12 in the fight against Diabetic Neuropathy. I've walking living proof of the benefit (purchased another bottle yesterday from iherb). Probably will be taking this supplement until I die, but who cares, the benefits are astronomical in my case. But amost every doctor said: "oh it can't hurt, well, if it works for you, but I never heard of it working, to the very impractical "Oh, I would never recommend B-12 for anyone unless they have pernicious anemia, I went to medical school and were never told about B-12". So I said "but it worked for me, and the doctor just shrugged. I wasn't all know-it-all in his face, I simply asked a question about Methylcobalimin. You should have seen his face when I said there was a difference between cyanocobalimin and the methyl. He looked at me like I lost my mind. Jeez Thank goodness, this was NOT Dr. Fred. He likes to get a patient's views on their illnesses. He appreciates the fact that we exercise and watch what we eat. He says stuff like "I wish all my patients had your fortitude". So there are good guys out there. We just have to educate the other ones. Not an easy task.
__________________
. CONSUMER REPORTER SPROUT-LADY . |
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#30 | |||
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Member
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I think a good part of the problem is that nutrition is not emphasized very much in medical school, other than just in an overall basis...
I don't know what people do in this case. I am sure a lot suffer unnecessarily because lack of proper nutrition contributes to their problems. Cathie |
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