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tinkerbell0495

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Hi,

So I am a new member to this forum but I've been a guest on this forum for months. I admire all you guys and I hope and pray I will be as strong as most of you as I go through my journey.

Here is my story:
I started twitching last June. I started in my torso and legs. I didn't notice any weakness at all. I can still hop, jump, skip, walk on heels..etc. then in September I noticed I started having trouble walking. It would come and go. I had an EMG and it was clean except for carpal tunnel in left wrist. My walk has never gotten better, I can no longer walk on my left heel or hop on my left. I now twitch all over except on face and tongue. Went back to neuro and had another EMG. My neuro wants me to see a specialist in NYC and have another EMG.
Here are the results:
Lower Body
Chief Complaint:
Diffuse fasciculation in all extremities, recent exacerbation. Rule out generalized neuropathy. Rule out motor neuropathy. Rule out motor neuron disease.

Nerve Conduction Studies:
Nerve conduction studies were performed on both lower extremities.
Motor nerve conduction study was significant for preservation of motor response in the peroneal nerve bilaterally and tibial nerve bilaterally.
Sensory nerve conduction study was significant for preservation of sensory response in the sural nerve bilaterally and superficial peroneal nerve bilaterally.
F responses were within normal limits.
H tibial response was mildly prolonged in the left side.

Electromyography:
Needle EMG was performed on both lower extremities and demonstrated fibrillation and positive sharp waves in the tibialis anterior bilaterally, right gluteus medius, left medial gastrocnemius and left gluteus medius. Signs of chronic denervation-reinnervation were observed in the right gluteus maximus and left gluteus medius. Fasciculations were observed in all sampled muscles.
Needle EMG was normal in the lumbosacral paraspinal muscles.

Upper body:
Nerve Conduction Studies:
Nerve conduction studies were performed on both upper extremities.
Motor nerve conduction study was significant for preservation of motor response in the median nerve bilaterally, low CMAP amplitude of the radial nerve bilaterally which is most likely related to submaximal stimulation, preservation of motor response in the ulnar nerve bilaterally.
Sensory nerve conduction study was significant for preservation of sensory response in the median nerve bilaterally, ulnar nerve bilaterally and mixed median and ulnar nerve bilaterally.
F responses were within normal limits.

Electromyography:
Needle EMG was performed on both upper extremities and demonstrated fibrillation and positive sharp waves in the first dorsal interosseous bilaterally, abductor pollicis brevis bilaterally, abductor digiti minimi bilaterally, flexor carpi radialis bilaterally, flexor carpi ulnaris bilaterally, deltoid muscle bilaterally; increased motor unit amplitude in the right abductor pollicis brevis, right extensor digitorum communis, left first dorsal interosseous, left extensor digitorum communis and right biceps. Fast-firing was observed in most sampled muscles. Fasciculations was observed in most sampled muscles.
Needle EMG was normal in the cervical paraspinal muscles.
Needle EMG was normal at the level of the T5 paraspinal muscles.
Needle EMG was normal in the orbicularis oris and hypoglossal muscles.

I know something is going on. Does it look like it could be ALS. I feel all my twitches. I also experience zaps in both my legs. The only relief I get is when I wrap my legs around each other tightly and numb the.

Can someone out there shed some light on these results?

I really appreciate it.

Thanks in advance.
 

Nikki J

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Hi Tinkerbell. Sorry to see you here. In my non neurologist opinion that is a concerning EMG BUT there are other things that mimic ALS that it could be. I hope the specialist you are referred to is a neuromuscular specialist? And it has happened a couple of times that people report being told ALS or very suspicious EMG by a local neurologist and are cleared by the neuromuscular specialist will hope same for you! Please feel free to ask questions
 

tinkerbell0495

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Hi Nikki,

Thanks for your reply. My neuro who performed emg is a neuro-muscular specialist. I was hoping because something came up in my ncv test it would not point to ALS?..
 

affected

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tinkerbell what did your neuro-muscular specialist say about all these results?
 

tinkerbell0495

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Hi Tillie,

I have not met with him. He scheduled an appt with specialist from Columbia to have another EMG. I called his office several times and he has not returned my calls. :(

Tinkerbell
 

affected

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OK, thanks for replying.

Usually these reports have a summary/conclusion at the end of them.
 

tinkerbell0495

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Hi,
I thought I read it is highly unlikely to have abnormal results in NCV and it be ALS. I know it not 100% likely but the probability is there?

Tinkerbell
 

Nikki J

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True ncs is usually normal so hope for a mimic! I am shocked a neuromuscular specialist who was your doctor did not explain on the spot what he found just said go to see another doctor? How long have you been waiting for a call back?
 

tinkerbell0495

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Oh Nikki, it's been so stressful. I called at least twice a day for the doc to call me back. Then finally his assistant mailed the results me yesterday. I am really not in a good place. Thanks for being here for me.

Tinkerbell
 
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