Getting a 2nd EMG next week - my neuromuscular doc is worried

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Jshemnitz

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Hi,

I posted before in early March but the thread has since closed (Nervous I have ALS / Just saw a Neurologist)

I had a clinical exam with a neuro muscular neurologist at Tufts in Boston that concluded with no features that would indicate anything to be worried with ALS or other neuro-degenerative diseases. The doctor did this supposed “thorough” exam in only 15 min, so I was worried that he didn’t really do as good of a job as he should have as I had been seen by a PT person who had found weakness (in her view) in in both my shoulders previously and the doctor did not see those same issues.

The problems continued to get worse through the month of March, so I asked that same Neuromuscular doc to do an EMG to calm my fears (that same doc that I saw did the EMG himself.. the tech did the NCV). (see attached for the results of the EMG and NCV as well as the summary remarks. The NCV came back clear except for some carpal tunnel and the EMG was clean except for 1 muscle group that had “sup max” activation which he concluded only happens because of poor effort, pain or CNS lesions. My fear with that EMG was that he only tested 5 individual areas all on my right side (my dominant side)… Also, the sub max activation scared me a bit too.

I ended up getting a 2nd opinion with another Neuromuscular neurologist at MGH a few days after that EMG was done in late March (she is in their general neuromuscular practice but not in their specific ALS clinic practice). She did an extremely thorough 1 hour+ clinical exam (I have 0 concerns or complaints with her visit); The majority of the exam came back normal, but she did find clinical weakness in both my shoulders. She said she should not be able to break the shoulders with her strength tests on a healthy 39 year old. Because of this, she said there were no obviously features to indicate ALS at this time, but she did want me to go to an Endocrinologist to get tested for Kennedy’s Disease (even though she wasn’t very convinced it was that.)She set me up with a 6 month appointment for later this September to continue to monitor my issues in the neuromucular clinic. The endrocrine doc at MGH ran a bunch of bloodwork and did 24 hour Urine and all the tests came back pretty normal.

Fast forward 4 months and my symptoms have rapidly gotten worse over the past couple weeks; I reached out to my MGH Neuromuscular doc and she is concerned and wants me to move up my appt by 2 months and come into the clinic next Friday for a repeat clinical exam and a EMG that she will perform herself so now I am totally freaked out.

See below for a list of the most current symptoms (in addition to what I had going on in the winter)
  • Started getting cramps in my right hand (mostly index finger and pinky finger); some cramps on left hand by pinky too; (I could barely hold an empty box in both hands for a minute before I lost the ability to hold it up and my hand cramped up for a second); getting the cramps in my forearms too after typing just a little on the computer; also getting cramps in my right leg
  • Weakness is increasing in my arms, hands and legs (legs feel heavy all the time and it makes it hard to walk long distances)
  • Muscles continue to rapidly pour off my body (legs especially the thighs are the worst – see attached picture); also upper arms, chest and back; even on my head and top of neck where it connects to head (my baseball hats have extra room on them now; I know "global atrophy" is considered weight loss but that's what I am worried about. I have seen my primary care and other specialists this year to rule out non neuromuscular issues that could cause all of this, and they are out of ideas
  • I went to my last belt look again this past week (my coworkers commented that I looked really skinny all the sudden this week
  • I have read case studies where atypical presenting ALS symptoms that were the first to be detected was weight loss because of metabolism changes (not because of difficulty swallowing or eating less or GI issues, etc)
  • Twitching started up again in my legs (calves mostly..more on the left side)
  • Headaches (3 different kinds) on the left side of my head most times – had a brain MRI that was clean September 2018 except for a small arachnoid cyst they found that I was probably born with
    • 1.The minute I wake up every day and once I am up for a few minutes and walking around, they go away (never had this before up until the last couple weeksI actually failed my CPAP trial for my mild to moderate sleep apnea and they are going to do another sleep study later this summer and potentially try BiPap too
    • 2.randomly during the day (no more than once a day); at least once every 2 to 3 days
    • 3. within 90 minutes have having a single alcoholic drink (wine, beer, hard.. it doesn’t matter) – almost every time..never had this before up until a couple months ago
  • Having to clear my throat or cough occasionally after eating or drinking water (feels like something is caught back there)
  • Continuing to wake up with sores on my inner lips and cheeks from biting and not even knowing I am doing it (I saw an oral surgeon at my dentist’s office because it keeps happening
  • Teeth Sensitivity to heat and cold has gotten worse (it started in the winter);
  • Smells have started getting really weird all the sudden


In terms of the normal ALS warning signs, I have no issues buttoning my shirt, I am not tripping, I can stand and walk on my toes, I can walk on my heels, but have a hard time standing on my heels without walking; I can do a standing jump up several stairs;

I can barely do a few pushups before my arms are exhausted. I can’t run for more than a ¼ mile before my legs are exhausted; I have to switch my hands every 15 seconds when brushing my teeth because my hands get tired very quickly; I can barely lift my normal weights above my head more than 2 or 3 times without it being a struggle

I am terrified to go back to the neuromuscular doc next week

Thoughts?
 

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KarenNWendyn

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Your thread back in March was so clearly NOT ALS that we closed it for your sake and ours because you couldn’t be reassured and accept our conclusions and recommendations.

Now here you are again, with a great-looking EMG. Still nothing in your story points to ALS. We are not going to tell you anything different. Also, you’re seeing neurologists who can examine you. Why not take your questions and concerns to them?
 

Bestfriends14

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As previously advised to you, please seek help for your nosophobia disorder. You'll get much farther with counselling then you will hanging out on sites for terminally I'll people and their caregivers, especially since you've been cleared 10 different ways of having ALS.

Best of luck to you in life.
 

lgelb

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Not seeing any new news, except if you have sleep apnea that is not treated, obviously that's going to factor into these symptoms, even being able to push in your shoulders. Lack of quality sleep affects potentially everything on your list, including your anxiety. So march forward with the BiPAP.

This is a classic case where you are afraid because your appointment has been moved up, but that was all you. We have no objective reason to believe anything ALS-related has appeared or become worse. We previously commented on the EMG; there is nothing to worry about there. But you are going to MGH and that will be clarified.

Please don't post again until you have findings from the MGH appointment and EMG.

Best,
Laurie
 

Jshemnitz

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I forgot to add 1 thing to the list that just occurred to me because it just happened 1 minute ago. When I eat, I can still feel small food particles at the back of my throat that don't seem to want to go down even some times after drinking water to help it move down my esophagus. Also, did anyone look at the atrophy in my legs? (Especially thighs) I know its bilateral as is all my other muscle wasting so points away from ALS
 

KarenNWendyn

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Mod note: op has been asked not to post until after neuro appointment and EMG. This thread will remain open, but I would request that others not post until that time as well. Thank you.
 

Jshemnitz

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I went back to my Neuromsucualar doc at MGH on Friday. I had my Nerve Conduction test done by the tech on my Left side (came back normal) and then my EMG done by my Neuromuscular doc on my left side as well (was done on my right side at Tufts 4 months ago). She just called me to say the EMG came back totally normal (waiting to get a copy of the actual report). She also did a quick clinical exam as well which was normal.

So good news is ALS is ruled out (and I feel good now about that based upon the meeting on Friday)... bad news is I continue to lose weight and muscle mass which she could easily see from her clinical as compared to our visit together 4 months ago so it's back to my primary care to continue that investigation, probably more cancer screening unfortunately.

I appreciate everyone's time from this site.
 

KarenNWendyn

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So good news is ALS is ruled out (and I feel good now about that based upon the meeting on Friday)
I’m glad to hear no ALS. Thanks for letting us know. I wish you luck on getting answers and hope that whatever the problem turns out to be that it’s treatable.
 

lgelb

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Great news. Most cancers are at least somewhat treatable, even if that is the cause. There are still other causes possible.

All the best.
--Laurie
 

Jshemnitz

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I forgot to ask 1 thing (that I didn't bring up to my neuromuscular doc on Friday). I have been noticing I have been coughing (not quite choking) on small food particles after I eat (it turned into a 30 min coughing fit with foot in my throat today). If I had bulbar issues, would that have been picked up on the general clinical exam looking at general body reflexes or by the left side EMG? (The EMG was left arm and left leg) reflexes were arms, legs and babinski. No inspection was done with my face/mouth, etc.
 

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So good news is ALS is ruled out
YES is the answer!
That's where you have to stay mate. Don't chase this, go back to your doctor with questions.
 

KarenNWendyn

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You’ve been thoroughly cleared of ALS, yet it seems you’re still chasing it. Time to move on, find some new interests, and find other things to focus on. I realize you don’t have answers for your symptoms. But you know now that ALS is not part of the picture.

Hanging around here and continuing to dwell on a disease you don’t have is not healthy. Furthermore, it drains our energy to have to keep trying to reassure you. I’m closing this thread for your sake. Please don’t open another.
 
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