ALS concern

[Cmh89]

My b12 panel and C-spine MRI were normal.

 

[Cmh89]

I have been referred to Dr. Kristin Johnson at Ochsner in New Orleans. She reviewed my workup so far and would like to repeat her own EMG…I’ve been scheduled for May 9 but they are working on getting me in sooner. Does anyone have feedback on this doctor? I’ve lost a significant amount of weight in the last few weeks and don’t know if it’s stress, the disease process, or both. I just feel hopeless. Thanks for the kind replies so far.

 

[Nikki J]

Looking at her credentials she appears well qualified with a fellowship in neuromuscular and emg plus some years of experience it is extremely common that neuromuscular doctors want their own emgs. Hope you get in sooner but May 9 is not that far as neuromuscular appointments go.
once you have prepared for the appointment try to step back and do some fun things. Worrying as you know just makes things worse

do let us know

 

[Cmh89]

Thanks for your response Nikki. Trying to stay off this board, but it’s tough. Dr. Johnson added me to her schedule to do another EMG on the 27th, with the follow up for 5/9. I assume if she sees clear ALS at the time of the EMG she won’t make me wait until the 9th to tell me so. Has anyone seen a “dirty” EMG like mine resolve? Be something other than ALS? Still holding out hope there may be a mistake on the first neuro’s part, or for some other rare diagnosis.

 

[Nikki J]

It is certainly possible it is something else.

if you have not signed up for her patient portal ( there is surely one) do so now. Your emg results should post on that so you can see them. You may need a code or link. when I got a new doctor last year the registration person who took my insurance information emailed me a link to sign up. If you need something like that call registration

 

[Cmh89]

Yes I am on the patient portal thanks. She is in the same health system as the last neurologist, just on the other side of the state (no neuromuscular docs here).

I appreciate your guarded optimism…even if you’re actually thinking otherwise. Here’s to hoping for literally anything else!

 

[Cmh89]

Good morning all. I had my EMG with Dr. Johnson at Ochsner. She is apparently the co-director of the ALS clinic there so sees/manages it quite frequently.

I do not have the official results of her study yet, as they haven’t been uploaded to the portal. She did both legs, my left arm, my tongue, my left trap, and my left lat (I think). My NCS was completely normal this time, as I was “much too cold the first time”. She did not see ANY of the polyphasic potentials seen by the first EMG doc. She saw the same acute denervation in my right lower leg, and everything else was a “beautiful study”. She said that this abnormality was not indicative of an MND. She also did not appreciate the muscle wasting that the first doc did ( I am VERY thin, so maybe that’s why…5’8” and tipping the scales at 110). The widespread fasciculations I am feeling are in her words, “just benign.”

She wants me to return for a full neuromuscular exam because she does not have an explanation for the weakness/fatigue/cramping in my face/jaw and perceived speech issues (lisping and difficulty forming words) or the weakness in my hand. I have had some periods where I fear bulbar onset as I know this does not always show on EMG…but this is irrational, right? I hope? I didn’t ask her at the time, but I will at my appointment in 2 weeks.

When I get the EMG report and the follow up clinical exam I will post, if that is alright.

 

[Nikki J]

You list hand weakness as one area of unexplained concern but your emg was of your arm yes? And normal.

it sounds like she is being extremely thorough let us know after the appointment what her conclusions are. Congratulations on your emg

 

[Cmh89]

Nikki…correct! Specifically my left thumb and index. Normal results there (per her verbal report). That and my lower cheeks/jaw/tongue area were my main concerns. Hand might be an intermittently pinched nerve somewhere along the arm, she’s not sure. I’m going to think positive that there’s something just as benign going on with my mouth.