Neuropathy - possible linkage to Amyloidosis?

[Blessed416]

Hi,

   I started to feel numbness (slight), tinglling, and pain in left lower back, buttlock, and thigh (sciatic nerve area) in late Auguest 2007.  Initial MRI indicated a L2-3 Disk Herniation.  EMG for lumbar and lower body showed normal response for left side, with certain abnormality on the right side.  Started physical therapy and this was supposed to be th eend of the story.
   However, in early September I started to notice increase of sensitivity (lowering of pain threshold?) in my arms, hands, fingers, with tender points.  For instance, I would feel finger pain when holding the steering wheel.  At the same time, the left lower problems progress to the right side.  (Still most of my problems are from lower left side.)  Started to suspect other conditions such as MS.  Did a brain MRI with/without contrast.  Finding was no change to one year ago.  (Did the earlier MRI in 2006 due to frequent headache.  Went away after lifestyle change.)  Various blood tests are all normal, except somewhat elevated protein, albumin, and calcium levels.  Latest EMG done in 12/7/2007 for both arms.  Normal.  Therefore Neurologist declares that I have no neoropathy, and that this looks like a Fibromyalgia.
   My father passed away in 2006, at age 78 due to Amyloidosis which attacked his kidneys, lungs, heart.  Came to realize recently that a form of it, though rare, is familial.  And some articles even indicate that it can cause neoropathy symptoms like the ones that I experienced.
   I would like to know if there is nerve involment from Amyloidosis, is it possible to have normal EMG readings?  What should I and my doctor be watching for during the neorology evaluation?  The fact that I have evelated levels of calcium and protein is a bit concerning.  What other blood test should be done?
   Thank you very much for your help.

[Lori707]

I am 57yrs. old and have been sick for a year. My father died of amyloidosis when he was 59. I have a positive RA Factor (rhuematoid arthritis). One rheumatologist said I have RA and another one said I don't. A recent whole body scan picked up degeneration in all my joints. I feel pain. Sometimes, I see redness but I have no swelling. About a year ago I started to feel some pins and needles in my fingers. It progressed and as of today, I have them throughout my entire body. Many times it gets so bad that it feels like hundreds of electrical shocks that sting so bad. I also have strange skin temperature sensations. I don't run fever.

I've been to many doctors and worked up in two major teaching hospitals. That was several months ago. The doctors I see keep telling me that I'm a complicated case and they don't know what they're doing. I always tell them to keep in mind and watch for amyloidosis. They don't even know where to start. I also have uclerative colitis (no diarreah) and very bad gerd/acid reflux. My stomach tissues keep getting inflammed and my gastro doc says he thinks I have stomach ulcers. I'm on Nexium and Carafate. In the spring he removed polyps from my stomach and found intestinal metaplasia.

I also have high serum calcium for the past several years and now high PTH (parathyroid). Low Vit.D (8.5). I had a scan and a Cat Scan of my thyroid but there's no adema. My endo doc put me on 50,000 IU of Vit.D and I get my blood work every 2 weeks. When my D went down, my calcium went down just a littl and my PTH went to normal. As I keep taking my D, my calcium is high again and so is my PTH.  Last month my RBC and HCT were low. My ferritin is 11 (low).

I don't know what to do!! I am searching for a doctor that knows how to look for amyloid and also can give me some guidance as to what I may have. The doctors are convinced that it's something autoimmune.

Please help me.
Lori

[Thumbelina]

I am a member of the Amyloidosis Support Group (ASG) web site is:  www.amyloidosissupport.com
Yes familial and primary amyloidosis can greatly effect the nervous system.  Our web site will provide you with much information.  We also have an on line support .  It is on www.yahoo.com  and under groups type in amyloidosis.  There you will find the amyloidosis support group.  Feel free to join and post your questions. All members are so caring and informative.  We also have a medical team of advisors can be consulted.
Thumbelina

[turtle221]

Hi.  I'm very sorry to hear you are feeling these symptoms.  I have been experiencing increased sensitivity to pain for about a month.  I began by tingling in the fingers, which has subsided.  Now I am having burning pain in my thighs.  I actually had difficulty wearing clothes because they hurt.  Now clothes don't hurt but it hurts in my thighs and buttocks when I sit.  I have read that the amaloid protein deposits can irritate the nerves snd cause similiar symptoms.  I am scared. I have an appt. with a neuro in a month.  You are not alone and I will pray for you.  

Good luck.  Please let us know if you find anything out.