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#1 | ||
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Magnate
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--doesn't necessarily rule out small-fiber neuropathy processes; it may just be that the processes have not yet advanced far enough to be really noticable.
People expereinced in reading the pathology results are necessary, as both the intraepdiermal nerve fiber density AND the conditon of those nerves (e.g., swelling/branching) need to be looked at. Density can be within "normal" ranges--the McArthur protocols usually put this as between the 5th and 95th percentiles of normed density (a little wide, I think--for an individual, whether you are reduced out of this range may depend on where you start), but if the nerves show abnromal sprouting/branching, that may be a sign of neuropathy. Then, too, if your syndrome is predominantly larger fiber, your small fibers on skin biopsy may "look normal". What other testing have you had (I think you also mentioned a nerve biopsy--was that of the sural nerve)? |
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"Thanks for this!" says: | Megan (03-15-2008) |
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#2 | |||
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Wisest Elder Ever
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A whole year on prednisone is a tough treatment.
Prednisone depletes many nutrients, and when those get low, a whole new set of symptoms can result. Many doctors are now testing people with chronic pain issues for serum Vit D. I suggest you have this done ASAP. These are the nutrients that prednisone negatively affects: Calcium Magnesium Potassium Selenium Zinc Folic acid Vit C Vit D Low levels of selenium and zinc lead to poor thyroid hormone utilization. These two minerals are involved in the conversion of T4 to T3 in the tissues. I have a magnesium thread on our Vitamin forum here: http://neurotalk.psychcentral.com/thread1138.html When you get tested for Vit D levels, also request electrolytes (calcium, magnesium, potassium) and Vit B12. Any B12 reading below 500 should be supplemented (American ranges are notoriously low for some reason). The tradeoff with prednisone treatment is quite high. Many people develop osteoporosis as a result. And if you take OTHER RX medications, you may be depleting EXTRA for certain things. For example ACE inhibitors for blood pressure, deplete zinc. Once a person begins treatment for something, very often new things develop as a result. Unfortunately doctors don't keep up with that information, and the patient suffers. If you were given Fosamax or Actonel or Boniva for osteoporosis prevention, this may be causing your PAIN. There are studies to show that these drugs cause pain in some patients, and are not really good for steroid induced osteoporosis.
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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 (03-15-2008) |
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#3 | ||
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Member
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my neuro said that in many cases - the skin biopsy comes out negative (which means - normal) - just because the problem is with the ions channels that in the nerve and not the nerve itself.
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#4 | ||
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New Member
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Thank you very much for the information. I think you have provided me with more information than I have gotten from my doctors this entire time! I have not been feeling very well so I am going to check out the links tommorrow and just answer a few of the questions now.
I live in western Michigan, near Lake Michigan and have been treated at U of Mich for 1-1/2 years. I have been on prednisone that long or more and also take imuran, pamelor for nerve pain, synthroid, singulair, enablex, and procardia, prilosec, calcium +D. Not sure if the blood pressure problem is from the vasculitis or the prednisone. I had a sural nerve biopsy early on which showed only slight axonal degeneration. Emg/NcV is in normal range but differs from left to right leg which I was told indicates an autoimmune cause. MRI of brain but not spine, spinal tap (normal) lots and lots of lab work for toxins, deficiencies etc. all normal. Had a positive P-Anca and high ESR early on before treatment but normal now. I have had a wide range of bizarre symptoms affecting hearing, speech, joints, muscles, memory, nerves etc. Things are much better now than before treatment but still not in remission as we had hoped. Also my walk is being affected and probably some autonomic function. Pain has become a huge problem. Wow, that was long and I think I answered everything. Thanks again for the info. I will check it out soon. Lakerk |
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