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#1 | ||
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Member
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I was a bit upset last night so didn't write to update you of my neuro visit.
Essentially tests showed no indication of large fibre or demyelinating Peripheral Neuropathy so the neurologist didn't really want to know me after that. Said that I could go to my GP and he could start me on Amitryptylin (sp). I felt very fobbed off and upset. I received NO validation at all for the symptoms I am having, in fact almost the opposite. She even said that the 'mind' is a powerful thing and can create all sorts of symptoms in the body. I asked her about writing me a request for the extra B12 test she said "your GP can do that". At the end after I asked a few more probing questions she did kind of concede that it may be a small fibre neuropathy . She also said that she had eliminated the possibility of diabetes and I asked "which test was that" and she said "the nerve conduction test".....but I am sure (& I didn't say this to her) that diabetics can manifest with a wide variety of symptoms and signs, such as distal, proximal, symmetric, large fibre, small fibre neuropathies etc etc. Anyway I don't think I am pre-diabetic, so that isn't an issue. What is an issue is the way you can be dismissed so easily. Anyway last night I concluded that there must be 'nothing' wrong with me and I would wake up this morning feeling totally fine with not a burning in my body or a fasciculation anywhere.......WRONG! |
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#2 | |||
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Member
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HI Megan, I'm SO sorry for all you are going through. I had the whole series of tests...and Nerve conduction test and all came back ok......it wasn't till I had the Nerve/muscle biopsy that it showed Chronic Axonal Neuropathy! My dr. said that most of the time it takes the biopsy to show what the problem is!
Maybe you should try another dr. Talk to your GP about it and hopefully he'll help you find someone who's willing to go farther than the conduction test. I just feel so bad for you having to go through all this testing! Hang in there, you aren't crazy!
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. Dx'd with Spinal Arthritis 09 Upper and lower Spinal Cord Stimulator surgery Replaced IV port 09 Had surgery for IV port for IVIG infusions 07 Halo 360 & 90 procedure for Barrett's esophagus Dx'd Chronic Axonal Neuropathy & Myopathy June 07 Dx'd IC May 2006 (after suffering for 25+ yrs!) Gall bladder surgery Aug. 2004 Gastric Bypass Dec. 2004 Dx'd: Barrett's Esphogus July 2004 Bladder surgery 2000 Dx'd: IBS 2000 Hysterectomy (fibroids) 1999 Laminectomy 1989 Dx'd: Degerative Disk Disease 1989 Cyst removed from my ankle -twice 1986 |
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#3 | ||
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Junior Member
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Hi Megan
PM'ed you Noong
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To find yourself ~ Think for yourself. (Socrates) |
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#4 | ||
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Magnate
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I found another neuro who took the extra steps tho and I've not looked back. I think that your neruo is not as up-to-date as many others are and YES! it hurts to be essentially 'brushed off'. There are other docs out there tho...go find the perfect one! It can happen. I hope it happens for you soon! - j
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#5 | ||
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Senior Member
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Hi Mega, so sorry you got that treatment off that neuro, many get the same deal including me first up, did she at least do Quantitative Sensory Testing [thermal test and vibration test] before she come to this conclusion ?
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#6 | ||
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Magnate
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--can never rule out a small-fiber neuropathy; NCV's/EMG's are simply not designed to measure activity in nerves with less of a diameter of about 5mm or so.
Moreover, the most common presentation of a diabetic or impaired glucose tolerance neuropathy is small fibers first. That doesn't mean one can't have large fiber involvement with diabetes or impaired tolerance, but more often one gets the pain and/or numbness and/or temperature sensation disruption symptoms of small-fiber disruption early on. As the mechanism of diabetic neuropathy is primarily due to vascular insufficiency, it makes sense that narrower, more distant from body center fibers would be the first to experience toxicity or hypoxia. Apparently this doctor needs to read a number of papers, starting with these: http://www.medscape.com/viewarticle/418568 http://www.endotext.org/diabetes/dia...tesframe28.htm http://www.medscape.com/viewarticle/418657_5 http://care.diabetesjournals.org/cgi...full/26/5/1553 And there are many more. It would seem you would need a neuro or other doctor who is a bit more motivated or knowledgable; do you have any options? And, anyway, have you had a 3-5 hour glucose tolerance test just to make really sure you have no impaired glucose metabolism issues? |
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