Old 02-01-2018, 01:18 PM #1 (permalink)
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Default Help with diagnosis

My mother is having a very hard time getting a diagnosis. She is 71 years old. Tingling in her legs and fatigue with even one block of walking in her legs for the past three years. Two years ago she started having difficulty clasping a necklace and now there is some atrophy between her thumb and first finger. She still has use of her hands, but handwriting has suffered a bit. She is walking, breathing, swallowing. Some fasciculations were noted in the exam, but she does not notice any.

First Neurologist said likely CIPD NOT ALS. Based on symptoms, symmetry, EMG and nerve conduction test. He found conduction.

However, then she had a spinal tap which showed normal protein levels and a second EMG with a different neuro who did not see conduction. So, no inflammation and he says likely ALS. BUT we then realized she'd been taking tumeric pills (curcumin) and ginger root pills for two months prior to spinal tap and second EMG. Dr. doesn't know anything about these supplements and doesn't want to consider that they could be responsible for the changes in the EMG or the lack of elevated protein levels.

Now we are off to a third EMG, third and fourth neuro. It seem so complicated and nearly impossible to differentiate between a neuropathy and ALS, but if this is ALS it sure seems to be moving very slowly. Dr. mentioned maybe the legs are neuropathy and hands are ALS (but still even the hands are moving slowly - its been two years and she is still totally using her hands!)

I am flying in for the next three appointments and need to know how to advocate for her and what to ask. Do we ask for a round of IVIG to help determine what is going on? Any other thoughts from people on this forum? Thank you so much.

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Old 02-01-2018, 03:47 PM #2 (permalink)
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Default Re: Help with diagnosis

It is not just the lack of conduction abnormality on NCV testing that would signal ALS, of course, but positive findings on the EMG portion of the test. I don't know what if anything positive was seen in that regard on either test. And of course MMN does not always present with abnormal NCVs.

Sensory findings argue against ALS, but can be present in many disorders, including MMN, and can mean something or nothing. So as you can say, there could be overlap. Tingling and extreme fatigue in legs during walking also makes me think of PAD-- I assume she was screened?

Was she seen at UI, UC or Northwestern? Those are clearly the top 3 in Chicagoland. Or if that is where you live, where does she live?

Best,
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Old 02-01-2018, 03:55 PM #3 (permalink)
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Default Re: Help with diagnosis

Thank you so much Laurie,
Both emgs found weak conduction. First was slow and second was on time. We have consults at Northwestern and UIC next week. Anything specific I should ask to be ruled out in addition? We are terrified that this could be ALS. The first two doctors seem to disagree.
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Old 02-01-2018, 05:53 PM #4 (permalink)
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Default Re: Help with diagnosis

She is in good hands at either. I don't think you need to define ruleouts for them. If beyond the "weakness" that you might expect in peripheral/diabetic neuropathy, again, the NCV tests (the electrodes/nerve testing) argue against ALS.

I am still not clear on what the EMG (needles/muscle part) showed? Do you have a report? But it sounds like she may have more tests anyway.

It actually should not be that hard to distinguish neuropathy from ALS. But whatever she has, slow is good! And if it is something responsive to steroids or IVIG, so much the better.
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