Could this be?

[Nikki J]

Have you discussed with your pcp something to relax the muscles? Do they think it is spasticity?

appointments often become available at short notice so don’t despair. They probably need a longer slot for you as a new patient. Make sure that you are prepared in case something opens up. If all your records are not in the mgb system and can’t be shared through epic have a hard copy to bring with you

 

[miejajoy]

My PCP does think it is spasticity and has discussed baclofen. I am sensitive to meds and when taking Flexaril a couple of years back for an injury I had a bad reaction so we have hesitated to try it. I will be starting glycopyrolate for the excess saliva which will hopefully also help with the tongue and oropharyngeal fatigue issues. Swallow reflex paralyzes sometimes and not sure if Baclofen can help that but will follow-up.

That’s a good suggestion about my records. I will definitely be ready for a last minute appt.

Thank you again.

 

[miejajoy]

My posts were to seek guidance and ask questions. Yes, I have been unwell since 2019 but my bulbar issues only came to the forefront last year, along with my progressive muscle and motor skills symptoms.

Please accept my sincere apologies.

 

[Nikki J]

I don’t know what your bad reaction was to flexeril but if your pcp does not think it dangerous I encourage you to try baclofen. You could just take it at bedtime at first and see the effect Or another thing PALS use is tizanidine. If nothing else it would give Dr Reza a data point tha it did or did not help. As miserable as you are it seems worth a try

 

[miejajoy]

Thank you so much. I will discuss it again with my doctor. I really do need some relief soon.

 

[lgelb]

An EMG can only test for certain muscle and nerve problems. Since it's normal, we can only conclude that your problems lie elsewhere. That does not mean that you are not ill, as Nikki noted.

There are many conditions where you still have a normal EMG. But if you continue to believe that the EMG is "wrong," everything physical that is wrong will only feel worse. Therefore, as you explore what could be the problem(s), with a medical professional, it is probably worthwhile to talk with a counselor about what you are feeling and how to cope better.

 

[miejajoy]

Thank you. I do not question whether the EMG was “wrong”. I’m sorry if I wasn’t clear about that. I was only asking if it would cover the bulbar region since I wasn’t sure if they tested that area and I am challenged with disabling symptoms in my bulbar area.

I fully agree with your suggestion to speak with a counselor as I’ve been doing so since my symptoms began to worsen last year. As a counselor myself for 25+ years, I am sincerely and keenly aware of how helpful it can be to one’s mental, social-emotional, and physical health.

I appreciate your communication more than you know. Thank you.

 

[lgelb]

The kinds of MNDs that cause bulbar dysfunction would show on EMG in your limbs, yes, given your history, whatever the onset site. In addition, the hallmark of ALS is certain kinds of nerve damage showing on EMG in areas that you think are fine. You would not have ALS + a normal EMG after 2y of neuromuscular issues.

Glad to hear you are in counseling, from both sides.

 

[miejajoy]

Thank you for your guidance and for sharing your knowledge and your thoughts.