azlat
New member
- Joined
- Feb 1, 2018
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- IL
- City
- Chicago
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.
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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