Could this be Bulbar ALS

[molly1love]

Thank you all for being patient with all of us with fears. I’m 63 yrs old female. I have had fears in the past and been worked up by neuro at Weil Cornell I had a clean EMG in May 2022 of extremities. Then about a 4-6 weeks ago I developed a severe sinusitis. Coughing was persistent all day for weeks Then developed globus feeling and saw ENT. (Very specialized in throat issues) He said I have a right vocal cord paresis which he relates to viral infection in sinuses Made no statement about anything neurological says he sees this all the time. Wants me to go for speech eval for vocal exercises. I completely freaked out and now have twitches all over and started reading of course even here I saw people with vocal cord issues and voice issues who then had ALS. I take klonopin for anxiety which is at its highest and have a EMG and exam scheduled for Tuesday at Weil Cornell. I read that you should stop taking this drug prior to EMG. But my neuro told me i could take it. Not sure what to do. I will have bulbar area tested as well. But I see that’s not always reliable… thanks for any advice

 

[ShiftKicker]

Hi Molly-

I am so sorry you find yourself here again. While it's not clear what you may have, ALS doesn't appear to be in the picture. This has been a fear of yours for 10+ years now based on prior threads. If this was a motor neuron disease, you would be pretty severely compromised by now. Plus it seems like you've had multiple EMGs over the years since you first became concerned about ALS and something would have definitely showed up by now if there was something going on with regards to MND. It also sounds like the ENT provided you a reason for your current symptoms- a viral cause- and provided you with a treatment plan that includes speech therapy.

With regards to asking strangers on the internet advice about taking meds your neuro says are fine to take while undergoing an EMG? I don't think you will find anyone here who would contradict your neurologist. It also sounds like you're already doubting the results of the EMG before you've even had it. This seems unfortunate to me.

Prior threads:

Scary Symptoms

Do I Have ALS?

 

[lgelb]

Not sure why you are freaking out. You have a treatment plan for a problem that doesn't relate to ALS, and no evidence of ALS, an absence that will be confirmed with another EMG at a top institution.

But the possibility of Klonopin addiction is a way bigger problem than a vocal cord that needs work. Please work with a counselor who can help you with a more durable solution for your anxiety. If your current resources are not helping enough, you can find better ones.

All the best.

 

[molly1love]

Thank you for your response

 

[molly1love]

Thank you for taking the time to reply.

 

[molly1love]

I have a question I’m hoping someone can help me with. I went and had EMG NCV today at Weil Cornell due to vocal cord paresis dysphagia and voice pitch changes as above. I am being treated by ENT. But also some twitching body wide and cramping of toes and calf’s. I’ve seen these doctors before. I had spoken with MD at Weil Cornell about throat issues and he said come in we will do EMG/NCV. They did 3 extremities and I asked about tongue or facial muscles or sternomastoid. They said they don’t do those as tongue and sternomastoid muscles not reliable for bulbar. That EMG and NCV on extremities is clean so no ALS. Just wondering if bulbar shows in extremities I didn’t think so. Again thank you.

 

[lgelb]

You indicate concerns with bodywide twitching and LE cramping, so if these were caused by any kind of neurological problem or myopathy, the EMG would suggest as much. Given your account, two clean EMGs about a year apart argue against ALS or anything like it. I'd take your diagnosis and run with it, though of course if the vocal therapy is not effective, that would be a reason to reconsider down the road.

 

[molly1love]

Thank you. I was told by neuro at Weil Cornell most are no longer testing bulbar ALS (tongue sternomastoid etc. to risky) He said if no weakness no worries. I’m glad my extremities testing was clean but I had really worried about throat stuff vocal cord voice etc but I guess it’s a waiting game. Bless you all

 

[molly1love]

Hi all. Thank you again for your support. I am awaiting swallow study ordered by ENT. I was examined by a second neurologist ( the one at Weil Cornell just did testing no exam. The second neuro examined tongue and lips eyes and full neuro check. She also did needle part of EMG on 3 limbs. Normal. I asked her about sternoclidomastoid muscles but stated this doesn’t rule out Bulbar. She said the same as Weil Cornell that it’s risky to test bulbar muscles so most have stopped testing. She did refer me to someone at Columbia Presbyterian but it’s 5 months away and I’m not sure they test for bulbar. Any input would be so appreciated. Thank you!

 

[molly1love]

M
molly1love
I inadvertently started a second account and truly apologize for that. I am told by 2 neurologists that they no longer test bulbar muscles with EMG. To risky. I am lucky to be seeing Dr Mitsumoto at Columbia ALS clinic ion 6/27/23. My swallowing has worsened My study showed Adequate airway protection at all levels. Does anyone know how bulbar onset is tested for? Thank you for any assistance

 

[Bestfriends14]

It is untrue that testing bulbar muscles is too risky. They can test by putting a needle into your sternomastoid (sp?) Muscle.

According to the tests, your swallow is perfectly normal, and they see no need to instigate any treatment plan as it is not warranted.

Oh my, I just looked how long you've wasted your life chasing after this disease. How very, very, very sad; you'll never get this time back. Please go to counselling, so you don't spend your twilight years fearing a disease you in no way shape or form, exhibit having.

 

[Nikki J]

Please stay on your open thread. I have merged for you.

As recently as this winter my friend who is in a study of asymptomatic carriers had a bulbar emg done. The doctor is a leading als specialist and neurophysiologist. If he thought it risky he would not be doing it on a carrier for research. I don’t know why some doctors are now saying this.

It is true bulbar is tricky to diagnose so the diagnosis is often clinical and based on clinical findings as much as emg so it may be that without the clinical they think a bulbar emg however small the risk is not worth it. However you should have asked the doctor eho said this. If you were there expressing concern and they ordered this test which is negative you need to ask them if there is anything else that needs doing. You can also ask at Columbia. This will be your third neuro?

 

[molly1love]

Thank you. Hopefully at Columbia they can test. I did have a scare a decade ago when I had a very inflamed sternoclavicular joint painful and was out of work lost lots of weight. I went to internist to be cleared to go back to work and he looked at the plans of my hands and sent me to neurologist (atrophy?). That Was 2012 2013 2013. All was negative. I was good until 3/23 when I developed vocal cord paresis and dysphagia. Tongue feels funny. That drive me back to neuro as fearful bulbar onset ALS. But 2 neuros don’t test bulbar only extremities which was okay. I am going to therapy (started 1 month ago) which I feel I need whether I have it or not. Thank you so much for your reply.

 

[Bestfriends14]

My apologies, you've been after this for 11 years. You did not develop vocal cord paresis or dysphagia, as the report states. Vocal cord paresis can be deadly, yet you are very much alive.

You state that you are going to therapy; I think that's the best plan of action, coupled with meds. I hope who you are seeing is taking a biopsychosocial approach with you. It's easy for me to say that you need to move on from this fixation, but the mind is a powerful thing that sometimes ends up ruling one's common sense. This is evident in the fact that you started posting on the forum in your early 50s and you are now approaching your mid-sixties.

Please, really think about focusing on committing to counselling and really giving it a go. If you have a competent counsellor, they will look at your history and thoroughly address a plan of action for you to work on your illness/nosophobia disorder. You're wasting such precious time with all these unnecessary medical appointments when you can focus on one single avenue for help, and that's counselling.

I sincerely wish you all the best. Take good care.

 

[molly1love]

Thank you. I have a weak right vocal cord diagnosed by ENT. Difficulty swallowing which I feel is worsening. Hoarse voice. Voice pitch changes. I did have worries about ALS in 2012/3013/2014. Then I had years I felt well and didn’t think about it. This all started in February this year. I’m going for therapy as if I have bulbar als or I don’t I need to deal with it. It’s just frustrating no one can test for Bulbar ALS. I just need to know either way so I can deal with it. I’m due to see Dr Mitsumoto Columbia tomorrow. No testing scheduled. Propably a neuro exam. Thank you for all your responses.