Awaiting diagnosis

[Jarsmom]

Hello.
I started with foot drop about 6months ago. My left leg has gotten progressively worse and has moved to my R leg. Emg was bad showed decreased nerve conduction and muscle loss in both legs. I have brisk reflexes and positive Babinski on both sides. The neurologist agreed these we’re concerning for als but she did not give me that diagnosis. I see a mother neuromuscular specialist in May. Does anyone have experience being diagnosed i in as quickly as 6months

 

[Nikki J]

Sorry to hear you are having these issues. Something is clearly going on. Decreased nerve conduction? That sounds like it could be something else? Was MMN mentioned? Can you post the emg with your id info removed? Glad you are getting a second opinion

Some people are diagnosed very quickly. For others it is a long process

 

[grounded]

6 months was about right for me.

First symptom 4/2011 tripping when climbing stairs.

PCP did a bunch of tests & referred me to local neuro - on 10/1/2011 - about 6 months after first symptom. Did EMG, which I believe showed ALS but he wanted confirmation from university ALS center instead of telling me.

Local neuro didn't give a diagnosis to me, but referred me to university ALS center. ALS center did more tests & gave official diagnosis 12/2011.

 

[KarenNWendyn]

I had foot drop in both feet with both feet becoming involved within a few months of one another, but with abnormal EMG changes consistent with ALS in multiple areas.

So, in your situation, I’m confused about the “decreased nerve conduction”. As Nikki says, that sounds more like a neuropathy. There could also be something going on in your lumbar spine. Did you get an MRI?

With ALS, the nerve conduction should be normal but EMG shows denervation and reinnervation in multiple areas. It would definitely help us if you could post your EMG results. Lots of conditions are still possible to explain your symptoms. I’m glad you’ll be seeing another neuromuscular specialist next month.

 

[KimT]

Both my presentation and progression have been atypical. My EMG showed denervation and reinnervation in many areas but I was still strong. I had cramps and fasciculations that were evident and brisk reflexes but no reflex in my left ankle. It took them about a year to go from possible to probable. Then a month for the diagnosis. I've had over 10 EMGs, two for training purposes.

I've met others who have been diagnosed in less than three months. They mostly start out with a failure or something along the line of what Karen describes.

I think of the the weird thing about me was that my left arm was hurt badly in a car accident and that showed up on the nerve conduction study AND the EMG. Two separate findings for two separate things

I do think the neuromuscular doctor will sort it all out and probably do another EMG. My local doctor's EMG was nothing like Mayo, Shands, or Hopkins.

 

[ReginaS]

Hi,
my partner had foot drop and was referred to do an EMG by his primary care physician. Right after the EMG the neurologist told him he had ALS. It happened very quickly. The neurologist whom he saw was also head of the ALS clinic.

I bet the primary care physician had a good guess as to what pALS might have and referred him to the right neurologist.

This is just our story.

It was hard in the beginning. We had both read that foot - drop is often the sign of a more severe neurological condition but for some reason I thought 'this cannot be'.

I wish you wholeheartedly that you do not have to go through this but if you do there is a lot of support and we have truly met the nicest people. All the best to you.

 

[Jarsmom]

Thank you all for your kind responses. My MRI was clear
So I guess I will wait until I see the specialist at the university. I am praying she will have the answers. I do have both upper and lower motor neuron symptoms.
I asked my regular neurologist about ALS. She said it’s not a diagnosis she makes lightly. So I’m afraid she is referring me to the neuromuscular specialist for the diagnosis