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#1 | |||
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Wisest Elder Ever
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Here is a very good article on stocking/glove and nutritional neuropathies:
http://www.emedicine.com/NEURO/topic278.htm
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Megan (01-20-2008) |
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#2 | |||
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In Memorium
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Hi Megan -
My PN started literally overnight - I woke up completely numb up to one wrist and on the same side of my body - up to my ankle - it never went away - just progressed.... I didnt realize how much until I saw a neurologist and they did nerve testing..... I was first sent to by an HMO to a orthopedist who told me he'd never heard of such a thing - and was poo poo'd out of the office... when I finally got to see a neuro after repeatedly requesting such a visit from the HMO - she immediately determined I had neruopathy..... it took extensive testing to finally determine its both large and small fiber, demylinating and degernerative - and by then much damage had been done.... my diagnosis is CIDP.... (my most telling tests were the NCS/EMG and sural nerve biopsy (which I understand now there are better alternatives to on the biopsy)....... Would defintely recommend you check out mrsd's recommended site - as well at the stickies here! |
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"Thanks for this!" says: | Megan (01-20-2008) |
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#3 | ||
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Member
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Thankyou mrsd for that link I will open it when I finish writing this.
At very big risk of repeating myself Glen the tests I've had done have all been negative: EMG/NCV; Brain MRI; chest, abdo and pelvic CT; QST; numerous blood tests for Vit B12; Folate; Homocysteine; CA125; ANA's; ANCA's; FBE/CBC; LFT's; U7E's; TSH, T4,T3; ACE; SPEP; Endomysial A & T-glutaminas; GTT; ENA's (extractable nuclear antigens); and urinary porphyrins. The GTT had a big dip on the one hour reading and the two hour reading came back to the baseline fasting reading - considered a normal result even though it is called a 'flat line' reading. When I had the ANCA's done originally the comment came back that they couldn't determine the presence of ANCA because of the presence of ANNA (Anti Neutrophil Nuclear Antibodies). When I mentioned this to the second neuro I went to (because you mentioned that this could be important) he then ordered the ENA's - which were normal. You have already responded to that in a message a week or two ago. So I am going in circles really - although trying not to spend too much time thinking about it - just living! The terrible fatigue and brain fog that I had for four months has lifted significantly since I started on the shark liver oil and the N-Acetyl-L-Cysteine. ![]() ![]() So that's about it in a nutshell. The fatigue much better but the PN the same. |
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#4 | ||
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Magnate
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--because is does give an idea what to go on.
I noticed two areas that you did not mention, that would be very important to have tested: First, they should be giving you an immunofixation electrophoresis of serum and urine for rogue monoclonal antibodies (M-proteins). When these are found, the condition is termed monoclonal gammopathy. In about one-third of cases, this is associated with some form of blood dyscrasis, but in two thirds it isn't and is termed monoclonal gammopathy of undetermined significance (MGUS). This is a fairly common cause of neuropathy, as the rogue proteins cross-react with certain components of peripheral nerve. In keeping in that vein, you should probably be titred up for some of the SPECIFIC antibodies for peripheral nerve--the GM, GD, GQ series, anti-sulfatide antibodies, anti-MAG (myelin associated glycoprotein antibodies), and a few others: http://www.neuro.wustl.edu/NEUROMUSC...y/mprotein.htm http://www.neuro.wustl.edu/NEUROMUSC...oantibody.html (Forgive me if you've had any of these before and this repetitive.) Last edited by glenntaj; 01-21-2008 at 06:51 PM. |
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#5 | ||
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Member
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Hello Glen,
I will print off that info and attend to it when I can. I am going away for two weeks, from tomorrow, so we'll see what the holidays do for me. Thankyou once again for the targetted suggestions as I have not had them done. ![]() |
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