Intermittent Slurring for 18 Months

JodiR

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Hi, everyone.
February 2021, I started to have intermittent slurring that has lasted for 18 months. I have no limb weakness or tremors.

In April 2021, my GP ordered an MRI. Came out clean. In May 2021 I was diagnosed with Stage 1A breast cancer, so I put a hold on the slurring speech problem (lumpectomy and radiation--doing great now!).
In January 2022, I did a barium swallow test. Everything came out great! No issues.
In April, 2022, my speech wasn't getting any better, so my GP felt that I may have silent reflux. He prescribed me protonix and sent me to an ENT.
In May 2022, the ENT did a laryngoscopy of my. Cords, etc. in tact-no lesions. the ENT "diagnosed" me with dysarthria and told me to see a speech therapist. The ENT said, if the speech therapist doesn't help you, I will refer you to a neurologist.
June 1, 2022, I had my initial visit with the speech therapist today. She evaluated me and kept shaking her head. My swallowing was fine, my speech wasn't "horrible" and she even said that some things were great. My tongue is VERY weak, however. She gave me a bunch of exercises to do (which I definitely will do--I'm a rule follower). She feels that I will be able to strengthen my tongue which will, in turn, help improve my speech.
My hard/soft palate are in tact.

I have videoed my tongue several times looking for fasciculations (sp). I see them when my tongue is stretched out, but do not see them when my tongue is at rest.
I will pose this question to the "experts" all of YOU... After 18 months of only speech issues and no limb issues (i.e., weakness, clumsiness, tremors, etc.), do you think this is bulbar ALS? I asked the speech therapist and she said, "Let's not make that jump."

Thoughts on an ALS or Bulbar ALS diagnosis?

Thank you!
 

lgelb

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The plan seems sound. If your tongue strength improves with speech therapy, well, ALS and related bulbar disorders don't go into remission, and don't usually present as "tongue only" for 18 months. There are multiple reasons for tongue weakness, so the speech therapist is right not to jump without further evidence.

If you need an EMG, you will get one and that will shed more light. At some point, you might also have a brain MRI to rule out a small unappreciated stroke, bleed, or clot, especially if you have a history of high blood pressure or diabetes.

Whatever you have sounds more stable than progressive, and, of course, that is good, too.

Best,
Laurie
 

JodiR

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Laurie,
Thank you so much for your reply. I will tell all of you on this format this much--no matter what happens (I'm diagnosed with ALS or not), I have gained so much insight and respect into this disease. I'm thinking about volunteering to help those affected by it--even if I can provide respite care for a caregiver. I'm retiring on July 1 and will have time then. Much respect for all of you... sending virtual hugs and love.
 

JodiR

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The saga continues. Last week Wednesday night, I started with muscle tremors during the night. I also noticed that I have tongue atrophy [photo removed] I am waiting on a call back from a neuro for an appointment (i should be able to make an appointment on Monday). Seems like my symptoms are really advancing fast. When they say bulbar onset can be aggressive, they werent kidding. I can't wait to see the nero and get a diagnosis. My husband and I are devastated. As a side note, we sold our home last week, are planning to live in our 40 ft camper in Wisconsin until October. Then, we plan to drive to Arizona where we are building our retirement home. My head is spinning. My husband is the best... he said he will take care of me no matter what. Question-i think this all points to bulbar ALS. Anyone out here think otherwise?
 
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lgelb

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Hi, Jodi, photos of the sort you posted are not helpful here, and can cause distress, so I removed yours.

It is still quite a jump from "intermittent slurring," dysarthria [a feature, not a diagnosis] for which you have had one (?) SP session, self-diagnosed tongue atrophy and muscle tremors to your conviction that you have ALS. I certainly wouldn't make life decisions based on that belief. My strong advice is to await a clinical diagnosis before you make more.

So yes, I think everyone here would "think otherwise" first, based on what you have said, and absent an EMG and neurological evaluation.
 

JodiR

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Thanks for your reply. I should clarify that we planned to sell our home in WI and build our retirement home in AZ long before dysarthria, etc., symptoms started showing up. I appreciate your response, though. Thank you.
 

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I hope you get some answers soon Jodi, there is a lot happening there.
It sounds quite different to how things went for my husband who was quite typical with bulbar presentation. I think there are still a lot of things that could be causing your problems before ALS, so please try to allow the doctors to do their task, if this is bulbar ALS, and particularly if it is so aggressive, the clinical evidence on exam and through EMG will show it without a shadow of doubt.
 

JodiR

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I have my neuro appointment scheduled for August 5 (the earliest that I could get in). I'm going to ask the neuro if they can perform an EMG test the same day to provide me with some answers. I've never had an EMG and don't know if that's something that's done in the doctor's office or not. I've been having muscle fasciculations at night and some during the day. They are all over my hands, arms, legs and scalp muscles, too. However, I don't have any limb weakness yet (hopefully I won't). I haven't lost any manual dexterity (I can button/zip my jeans, tie my shoes, cook, do dishes, crochet). I have had three speech therapy sessions. My tongue continues to be very weak. However, my repetitions have improved (tongue twisters, reading aloud, etc.). I have shared my ALS concerns with the speech therapist and the speech therapist is baffled as she said "people with ALS don't improve." However, she noted the tongue atrophy and mild tongue fasciculations. I'm typing all of this as my symptoms are somewhat all over the board. Yes, I have been having anxiety about all of this. I'm 60 and this is the first time in my life I'm experiencing anxiety. I'm normally a very calm and focused person.
I'm putting all of this information on my thread for others to follow and ponder. I will post an update after my August 5 neuro appointment. Thank you for taking the time to read this.
 

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Generally an emg is done in a dedicated room and often ( not always) by a different physician. The latter depends on the individual doctor and practice set up. Depending on how many muscles are deemed appropriate it could take some time I have heard of doctors doing one or two muscles of concern during a visit but usually it would take more time than they would have especially as you are going for an initial consult. This doctor is obviously fully booked as you are waiting for an appointment
 

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You are best to allow the specialist to decide if an EMG is even warranted and how to proceed. Please don't go in pushing your own agenda, and please believe what they tell you. Do let us know the results, but just focus on what you can do in a positive way in the meantime as that is what you can control.
 

JodiR

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Tillie--you are a wise person and I appreciate you taking the time to read my message. I will definitely share the findings after my August 5 appointment. Thank you.
 

JodiR

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Good evening. My neuro appt is less than a week away. I am, of course, nervous but trying to remain positive. All of you are so patient with all of us who are in "limbo" waiting for an appt, an exam, test results, etc. I would appreciate any prayers or good vibes from any of you before my Aug 5 appt. I will let you know what (if anything) comes out of this initial neurology appointment. Over the last month, my voice has gotten a little worse; although I try to implement the strategies that my SLP provided to me during our sessions. Thank you.
 

JodiR

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I had my neuro appt today and the doc said BULBAR ALS. I have an EMG scheduled for 8/17. She is also setting up an appt with a neuro muscular specialist. I am going to ask that they test me for myasthenia gravis, too. The neuro's bedside manner needs work. She examined me and said. I'll be back to talk about a test I'll schedule. She returned with my appt sheet and a pamphlet on bulbar ALS never explaining anything. I said to her, "I wondered if this is what I had." That was it. She sucks. Thanks. Let me know if any of you think I should ask for certain tests besides MG.
 

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Go to the neuromuscular specialist and let them decide.
I'm so sorry she treated you this way. So many times we see a neurologist throw out lines like this, and the neuromuscular specialist says something very different. I'm hoping that for you.
 

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Oh, yikes, that is a really poor bedside manner. I am sorry you experienced that on top of the stated diagnosis. I will provide a link here for you, and I am sure other folk will provide further feedback:

Second Opinions

I am hoping this person's bedside manner is not their only fault and that they are straight up wrong. It can be helpful to have a person with you for your appointment with the neuromuscular specialist if you get scattered or overwhelmed when seeing specialists. They can have a list of questions that you want to ask and keep things on track if there's a chance to discuss your exam results and findings.
 
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