Could this be ALS?

[smfinger]

Hello, I am a 48 year old female wondering how likely it is that I have ALS. Here are my symptoms and specialists I have already seen.

1. I am unable to move my right pinky finger laterally - literally cannot make it touch my ring finger.
2. I have lost ability to use my pincher grasp on right hand.
3. I have Very Visible atrophy and inability to hold silverware with thumb and first finger.

I have had the following tests:

• Brain MRI - normal
• Cervical spine MRI- slight disc degeneration with NO nerve impingement
• Wrist MRI - ruled out carpal tunnel
• Elbow MRI - very minimal evidence of cubital tunnel- doctor didn’t think that was bad enough to cause extensive atrophy and symptoms displayed
• Brachial plexus MRI - normal
• Neurologist did EMG and nerve conduction tests - this is the part I really didn’t understand. It was clear there was nerve damage in both hands (they tested both sides because my left side is getting slightly weaker). He mentioned that when my muscle was at rest they should not have heard the “raindrops on a rooftop” but they did. I wasn’t completely sure what he meant.
• After all of the above tests, my first neurologist recommended I see a neuromuscular specialist at Mayo and I am in a holding pattern to see if they will take my case.

My question is this - what else could this be besides ALS? I point blank asked my dr if I should be concerned and he said that ALS is still in the differential but did not suggest other diagnoses it could be as well.

And, if Mayo doesn’t take my case, what is next for me?

Anyone else have similar symptoms? Appreciate any insight. I am aware that only a doctor can diagnose this and I am doing all I can to see a specialist but wondering if anyone has any similarity to me that can add any insight.

Thanks in advance.

 

[affected]

Sorry you find yourself here.
I'm not sure what you mean by 'it was clear there was nerve damage'.
Would you like to remove identification and post your EMG? That would help us a lot.
Did you read the READ BEFORE POSTING resource? It gives a huge list of things that are often found to be wrong when a person thinks their symptoms may be ALS. It is good you are being referred on as you have a path that makes sense.

 

[smfinger]

Thank you for your response. I am able to get into Mayo and should know more after my visit in February.

 

[Clearwater AL]

Smfinger, yes it would help us if you would post your last EMG report (Summary/Conclusion).
Or, return after your Mayo visit this February. I'm sure Mayo will give you the answers you need.

 

[smfinger]

Attached is my EMG. After this EMG I had 2 additional MRis which ruled out cubital tunnel and issues with brachial plexus. So back to square one and a lovely trip to Mayo! Let me know if you have any comments on EMG as I don’t really know what it all means to be honest. Thanks!

 

[affected]

Can you post the tables in the EMG, that would be the most helpful if you would like comments from us here.

 

[MupstateNY]

Sometimes providers don't give one the table of numbers. But you could ask them to send it to you as an attachment in the portal, or mail it to you. But posting your results here is totally optional.

 

[affected]

Of course posting results is optional, but we can't give an opinion on anything further without seeing the tables. Asking us to give an opinion on the bits we have seen of the summary with out context is useless.
That is why I asked for more information - we want to help people

 

[MupstateNY]

I don't know anything about Mayo, sorry. If they don't want to see you, I think you could go to an ALS Center if a neurologist refers you. Or you could see a different neurologist if you have trouble understanding the current one.

I would encourage you to send your questions to the doctor you've seen so far, via the patient portal. I don't know what was meant by the raindrops, sorry.