Looking for opinions

Nikki J

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It certainly should not be a false negative particularly as you have definite atrophy.

do you have the MrI report? Lesions in the brain sound like something else so I am especially surprised you are going to dedicated ALS specialist ( they are only ALS? Not neuromuscular?)
 

lisa g

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Jac112276,
Stoneybrook is a excellent hospital and university. I was raised in Commack. I'm certain you'll find your answers there. Good luck
 

Jac112276

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I’m at a loss of words, called neurologist today to find out the (exact notes on my EMG) and to follow up as to when I can come in and see the ALS specialist who is also a neuromuscular specialist. They read the EMG results and it was normal / for left arm, I said what about my right arm, they placed me on hold a while, said there were no notes for my right arm (which is my really bad arm. They said they will get notes and back. They said the doctor wrote no notes about my right arm. I made an 11am appointment with ALS nuromuscle doctor but then they canceled it. My doctor was me to see head of ALS muscle- which is also concerning since they are not available until April. So I asked them to ask the doctor if there was anyone else to see because April is just to long. Is it me or does this sound concerning? Thoughts needed because I don’t think think this is sounding good so far at all!
 

Jac112276

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Any responses are very appreciated lol and I just took a Xanax, 🤷🏻‍♀️
 

Nikki J

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That is weird yes but you had preciously been told normal? By the doctor who did it? They wouldn’t just forget something abnormal. Also the summary would be written as a whole not one for each limb. Stony Brook should surely have a patient portal. Are you signed up for it ? Very soon it will be law that most medical records be available to patients within a short time (48 hours). To comply with that most centers are already putting clinical notes and all tests ( with some exceptions like psychiatric) on their portals. My point is you can probably find your office notes, your emg and your mri report. You need to see the actual written records not have someone read them to you. I strongly suspect that the person you spoke to wasn’t looking at the right place

re seeing the doctor it does sound like you should see someone else in the group
 

Jac112276

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Thank you Nikki, I’ll update with what they tell me, I’m waiting for them to call. I do find it odd that they didn’t have the results of my right arm in results,
 

Jac112276

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They said they will have to call me in a day or two. I’ll update when I speak to them
 

Jac112276

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one more question when o called the assistant said she can view EMGs but doesn’t know how to read them, she said has to wait for doctors note, do you think that’s odd?
 

Nikki J

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there is a summary when reports are done. Either it is not written yet or she could not see it. I would not expect a non clinician to interpret a test even if it looks fine to them it would not be appropriate for them to say anything. The doctor said it was normal. They are the person whose interpretation matters
 

Jac112276

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I guess I’m confused maybe you can clarify, did she review the results or did she go by the notes from the EMG doctor. My neurologist is the one who read the notes. I also don’t get why I have to see the head ALS nueromuscle doctor as opposed to any of their specialists who have appointments ready for tomorrow. So far to me it seems odd and concerning. She said the EMG doctor has to update his notes about my right arm, so did my neurologist also review EMG or just EMG doctor, I’m so confused
 

Jac112276

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And I’m sorry for taking up your time, I truly appreciate your opinions, you’re a wonderful group of humans
 

lgelb

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Even leading ALS clinicians generally see other kinds of patients as well. The MRIs will provide more information, but with a negative EMG and brain lesions, ALS doesn't sound top of the list.
 

Jac112276

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Just got a message from stony brook they said both sides of EMG are normal, hoping when I see ALS specialist he will look at me and clear me of ALS, all the Atrophy is concerning and I am hopeful, I have to be, I wouldn’t be surprised with an MS diagnosis. Just need to get to the bottom of all the muscle waste. Still persuading getting an early appointment with the ALS neuromuscular doctor, I cannot wait until April. I appreciate everyone’s kindness
 

Clearwater AL

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Jac... "Just got a message from stony brook they said both sides of EMG are normal,"

Good news!

".... hoping when I see ALS specialist he will look at me and clear me of ALS."

He will!

Hope whatever diagnosis for you is treatable and even more so... curable.

Good luck.
 

Jac112276

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Thank you Al, I appreciate your response. I will certainly give you updates. I also joined as a member. Regardless of my diagnosis, I hope my small contribution monthly can help. This is a true cause that needs attention. It’s not acceptable that in 2020 we have mastered plastic surgery ( the fountain of youth as I call it) yet no cure for ALS and other incurable diseases. It makes me mad. Just wanted to share my thoughts on that. I don’t intend posting anywhere else, will just give updates on my condition and will stay a member for this cause.
 
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