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Re: Follow up for "Peripheral Neuropathy and Amyloidosis" posted on 10/26/98

Posted By Clara on November 10, 1998 at 18:13:29:

In Reply to: Re: Follow up for "Peripheral Neuropathy and Amyloidosis" posted on 10/26/98 posted by CCF Neuro MD MJD on November 10, 1998 at 12:50:00:

I had an EMG done today, and I am just a little frustrated. When the neurologist came in to put the needle into the muscle he did not do this to anything but my left leg and my right leg is the one that I have had more numbness in. He said the EMG was negative and that I do not have peripheral neuropathy. When I mentioned to him about the ultrasound of the abdomen and the calcifications noted in the spleen he said it wasn't important. This is not the doctor that I originally went to see. I am supposed to hear from him after he gets the report. If this is not a peripheral neuropathy then why do my feet and hands burn, why do I have numbness and tingling and sharp stabbing pains in my feet and my hands. This is not in my imagination. This wakes me up at night. It is very uncomfortable and sometimes very painful. Are there any answers out there that neurologists agree on? I appreciate the time that you take to answer these questions. Thank you.

I'm not sure if you've posted previously - has a diagnoses of amyloid been established by biopsy in your case?  If so, then here are some answers - First, amyloidosis can cause neuropathy involving the symptoms that you describe - it affects sensation far more than motor strength in the limbs. It tends to affect the smallest nerve fibers. EMG evaluates the larger, heavily coated fibers, and so, though it is generally very good in diagnosing neuropathy, it can miss abnormalities in disorders that affect the smaller fibers in the hands and feet.  Another test which is done at larger centers (Medicare and many insurance companies don't pay for it) is Quantitative Sensory Testing which can be more sensitive (though at times nonspecific) for small-fiber neuropathy.  Although it may help in your diagnosis, if the symptoms are suggestive enough, many neurologists will treat your pain as if you have a neuropathy even if specific diagnosis is difficult.  There are many medications out there which can treat the burning pain of neuropathy. Still, a specific diagnosis of amyloid neuropathy is important and ultimately, a nerve biopsy of a sensory nerve in the foot may be necessary for diagnosis.  Ask your doctor about the possibility of your amyloidosis causing a small fiber neuropathy.  Finally, regarding your question regarding the EMG of one leg - since neuropathies commonly affect both feet symmetrically, it is common practice to only test one leg and spare the person the unnecessary pain and expense of another leg tested; generally, the more affected leg would be the one chosen.
Thanks for answering my questions. A diagnosis of amyloidosis has not been established. I have Chronic Hepatitis C and on an abdominal ultrasound there were some calcifications in my spleen noted. My GI doctor said at the time that it could be nothing or it could be due to several things and one of those was amyloidosis. The next week I went to see the neurologist about the peripheral neuropathy and he mentioned that it could be caused by the Hepatitis C (I am in a remission with that  at present) or he also mentioned several other things and one of them was amyloidosis. I have also had BP problems for the last 2 or 3 months and at the visit to the neurologist it was 152/110. I also have Hypothyroidism. My original post was to find out if I was overeacting to the fact that 2 different specialist had mentioned the same disease in a 2 week period. I had not told the neurologist about the ultrasound. The doctor who aswered my post said that it was very important to get the info in the ultrasound to the neurologist. I also forgot to mention that 3 months ago by echocardiogram a mild Right ventricular hypertrophy was found.  The doctor who did the EMG told me those things weren't important at all and really acted like he was offended because I had posted here. Your posting has answered some of my questions. I know you are extremely busy, but if you have an opportunity to respond to this post I would appreciate it very much . Thank you and have a good night.
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