Is this bulbar onset?

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Joanna24

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Hi,

I would like to ask about early symptoms of bulbar ALS. I have had slurred speech since August. It was sporadic at first, but it got worse over time. There are days when it gets better and than it gets worse again. I have a little difficulty with swallowing. I had test done and it confirmed moderate residue accumulation. I have twitches in my lips and tongue, but the ones in the tongue are only when I lie down and swallow my saliva. It’s like swallowing triggers it. It lasts a few seconds and stops until I swallow again. This is very weird. I have twitches in other parts of my body as well, but those are sporadic. The other symptom is a feeling like my tongue, throat or lips were swollen or numb, similar to dental anesthesia when it’s almost gone, but not all the way. That feeling comes and goes, but makes harder for me to speak. I had done a lot of blood tests and MRI and everything came back normal, except I was diagnosed with celiac disease. I just wonder if my symptoms may indicate a bulbar onset of ALS?
 

lgelb

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Celiac disease, an autoimmune disorder, can cause symptoms including fatigue, burning, tingling, etc. as well as anemia, which can affect other issues such as you describe. And that's just part of the list.

I'd forget about ALS -- you aren't describing it -- and focus on getting your celiac disease under control.

Best,
Laurie
 

Joanna24

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I am really worried because of my speech. I speak like I was drunk all the time. Sometimes I can say a few words almost normal and sometimes I can barely pronounce words, but in general it’s never like it used to be anymore. Speaking is an effort for me and slurring is noticeable to my family. I also speak slower than I used to speak. My tongue and upper lip feels like it was swollen especially in the morning, but sometimes also during the day. I have been on gluten-free diet for two weeks and I noticed that the numbness I was feeling before gets better. My main concern is my speech as it progressed since September. 4 months ago it was almost normal, just sometimes slurred and now it’s bad. I was prescribed Mestinon for trial to see if my symptoms may be caused by Myasthenia Gravis, but I don’t see any improvement. I have EMG scheduled, but two months from now. I am just really scared. Is that how bulbar ALS feels/starts?
 

lgelb

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You were just diagnosed with celiac, right? Is slurring evident (without prompting) to anyone apart from your family? How long have you been on the Mestinon? It has its own side effects.

Generally, if speech problems were due to ALS, there would not be a feeling of effort as much as consistent speech deficits, not sometimes "almost normal" to "barely pronouncing" words. The feeling of swelling is not consistent with ALS, either. I would also ask about being screened for food allergies and make sure you are staying hydrated, and make sure your doctors all are aware of these issues.
 

rmt

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If you Google "celiac slurring" you will see lots of information about celiac disease causing slurring. I'm not a doctor but I would contact the doctor who diagnosed you with celiac and he/she about the neurological symptoms you are having and see what you need to do. I'm guessing you need a very, very strict no gluten diet.
 

Joanna24

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Yes, I was diagnosed with celiac by my neurologist, based on my blood test. I never had any gastrointestinal symptoms. The doctor said that celiac is potentially causing my symptoms and he also prescribed Mestinon as a trial for two weeks to see if it would work, as my blood test for Myasthenia Gravis antibodies came back normal. He said that some people with MG are seronegative. I have been taking Mestinon for 3 days and don’t see any improvement.
And yes, my slurring is evident to other people besides my family. And by an effort I meant that when I speak I have to really focus on my pronunciation, but I would need to speak really slow to not slur. Sometimes when I speak my throat gets tight and I can’t say those sounds like “g” or “k” at all and than my speech gets nasal. In general I have now problems with those throat sounds. I also have a hoarse voice for a few weeks now almost all the time. All these is very concerning. I have done tons of tests and I still don’t know what is wrong with me. The only test left is EMG, but I have to wait until March to have it done.
 

rmt

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You do know one thing that you have, celiac disease. And it may be what is causing your speech issues. While you wait for the EMG, you should work with your doctor to get the celiac under control and see if that improves your speech.
 

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While you wait to see if the most probable cause, celiac, is the culprit, you could ask to see a speech pathologist who can work with you living with these issues.
 
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