Could this be Bulbar ALS

[momma29]

I first want to thank all of you for taking the time to read my thread I know each and everyone of you are on precious time and I’m hoping you can ease my fears just a bit or may even give me some clarity.

Im 32 a mom to a precious little girl which makes my health scares a little more unbearable for me. I have been dealing with a bit of wide spread symptoms since January 2024.

it started with a normal visit to my orthodontist (adult braces) nothing out of the ordinary just routine cleaning and some adjustments but this was my last appt before getting them removed the following month. I woke up and my cheek went numb followed by a weird metallic taste in the mouth. After going to dentist and my pcp they ruled out any infection but put me on antibiotics to be sure. Nothing got better and the pain in my jaw was excruciating and seemed to travel down my neck my jaw seemed locked and my face started to burn as well. That’s when some other things started to happen. I started noticing numbness and tingling in other part of my body hands feet arms legs with lots of muscle spams all over. I also had some vision disturbances in my right eye the same side as the jaw started.

After ruling out any infection and any jaw abnormalities they sent me to a neurologists. After listening to my complaints the neuro did a full work up for ms which so far everything is normal. I have had blood work mris of my brain and cervical spine and thoracic spine. A clean emg of the extremities and I’m waiting for my results of my lumbar puncture. The only thing neurological so far they found was inflammation on my optic nerve that I need to be seen by a neuro opthamolgist.

As time goes on my symptoms seem to be increasing to weakness in my tongue and I often notice me slurring or stumbling on my words. They did not do an emg of my bulbar region. I guess my question is have you know bulbar ALS to start with something weird like TMJ or be masks by another illness? Maybe since slurring because of how everything feels I’m not sure. Now that a lot of the swelling and burning has gone away I feel more of the slurring and twitching of the tongue to be more pronounced.

Should I go back and push for an emg of the bulbar region? When i mention to the neuro about als she kinda laughed and she just said that’s nothing we need to worry about right now. That’s not comforting at all. Also I’m sure your wondering how I got to thinking this might be bulbar ALS is everything I have been reading always mentions this. Again I’m sorry if I took up to much time with my worries I really do appreciate the time to listen.

 

[ShiftKicker]

Hello-

Sorry you find yourself worried about your health. We do ask that people read here first: Read Before Posting, as it answers a variety of questions and also explains why things like pain, tingling, burning, swelling, etc, all point to some other issue and not ALS. Your neuro is correct in that ALS doesn't appear to be in the picture, as your symptoms point towards something else entirely. This is not how bulbar ALS shows itself.

I think the neuro ophthalmologist may be able to provide you more information once you've had that examination. When will you be seeing them?

 

[momma29]

Thank you for clarifying I guess my anxiety is getting the best of me as the slurred speech and swallowing problems seem to be a bit surreal for me. I do have an appointment with them the beginning of July. My eye also points away from ALS is that correct? The Neuro believes I need to go to a rheumatologist as well. I have been so many places and nothing seems to be showing to be a problem at this point but my body just feels bad.

 

[lgelb]

I'd make sure they ruled out polymyalgia rheumatica/giant cell arteritis. The rheumatologist can do that (and anything else rheum, of course, which is why you're being referred).

I agree this doesn't sound like ALS, but things that are immediately treatable should be ruled out.

 

[momma29]

Thank you both again I will be sure to mention these to my rheumatologist when I see them. Just a little update I did have my neuro ophthalmologist appt the machine they used at my neurologists office to check my optic nerve read abnormal because I have a small optic nerve as the doc described ( I was born that way.) so I have been cleared by him. I’m still having a bit of slurred speech that can be noticeable to others at times it seems to be mostly when I’m experiencing a tingling sensation in my mouth I can’t tell if they are muscle spasms or actually just a weird sensation. Do you think it’s worth mentioning to my neurologist to check or maybe do an emg of the bulbar region? Or is my clean emg from my extremities sufficient enough to stop worrying.

 

[Nikki J]

Of course you should tell your doctor about a symptom. I do not think it sounds like ALS though If they decide it warrants an emg - a decision they should make- I would expect it to be looking for something else. I suspect they won’t suggest it

 

[momma29]

Thank you so much for your guidance it means a lot to me.

 

[momma29]

Hi again,

I just wanted to give a little update I went to my rheumatologist who said she hadn’t seen anything fitting my symptoms but she did do some blood work to check. I got the results of my lumbar puncture and all came back normal. I think at this point I’m even more nervous than I was before that nothing can explain my symptoms. I still have the burning in my face and my tongue seems to pull to one side with a lot of painful muscle spasms in my jaw and throat with noticeable slurred speech. My facial nerves seem to be weak as well a lot of trembling in the checks when I try to smile. Something else I am noticing now is my hands are cramping and when using certain muscles usually in my hands or arms and I see fascilations. I’m waiting for my neuro to call me back about my symptoms and see what further testing I should do to be honest I’m very nervous to do a bulbar emg after I was cleared from my extremities even tho I’m having problems in my extremities now should k have them repeat it again as well? I know I have a lot of health anxiety since this has not gotten better in 5 months and I’m sorry if I’m a bother I’m doing my best through this process and I thank you all for listening.

 

[lgelb]

Sometimes when anxiety and physical issues coincide, it can be hard to see chicken vs. egg. I would work with the neurologist, rheumatologist and your PCP on next steps, and not presume that there is some single grand explanation.

But if you can address the anxiety, perhaps with professional help, it can be easier to discern those chickens vs. eggs and what physically needs to be explained.

For example, your post from 3 days ago is pretty calm and reasoned, whereas today you seem to be spiraling a bit. That's where counseling can help you put the sequence of events into perspective, which can't help but be good for your physical health as well.

 

[momma29]

You’re right I am spiraling a bit. I seem to be declining very rapidly and I can’t tell if it’s what’s going on with me or my anxiety I was put on an anxiety pill from the rheumatologist. I woke up today with my arm very weak and spams like crazy. When the muscle starts to become atrophied does it typically have cramps and hurt?

 

[lgelb]

No.
There is really no reason to worry about ALS.
Given that some of your issues can be associated with poor sleep/poor positioning in sleep, I would re-evaluate your bed surface (pillow, mattress, any springs/frame) as well.

 

[momma29]

I feel so bad for keep bothering and asking questions. A lot of my symptoms seem to vary day to day and all I can think about is how I may have ALS. Just wanted to recap some things that have been going on my jaw tongue and throat seem to tense up to the point where I can’t rly eat and I have a weird sensation on my tongue I was reading how this could be damage to the lingual nerve which can be common in bulbar ALS? I have slurred speech sometimes at least I think I do and some ppl say they hear it sometimes. My tongue is very shaky and everything just feels weak and sometimes my neck feels like it may give out. My left arm feels weak and also jerks when using the muscles but I can still do everything I normally do I just get tired. My legs feel heavy like I have bricks strapped to them. Is it possible for ALS to progress this much in 5 months from the start of my symptoms? I’m trying to enjoy my family and live life normally but I feel so many new things day by day and it’s frightening. I really do appreciate you listening to me.

 

[ShiftKicker]

Hi Momma-

We've really provided as much advice and reassurance as we can here. You are struggling to believe the people here when they reassure you about it not sounding like ALS, and you aren't consulting with the people who can provide you the answers you need- your doctors. Please keep working with them.

It's not unreasonable to also seek counseling of some sort so you can have someone qualified to provide support while you work through your medical concerns. We are not qualified to provide this kind of support here and really can't provide the tools you need, so it's important to work with someone trained.

Take care

 

[momma29]

Hi there,

I know you guys have reassured me about this not sounding like ALS but I did have another question if you did not mind. I had a follow up with my neurologist today and she did not want to do a repeat emg on me since I just had a clean emg 3 months ago even tho i have worsening symptoms. This visit was very odd and I’m very concerned. She said from a neurologist stand point all my tests came back normal and she couldn’t even find an electrolyte imbalance. She referred me to what she called a movement disorder specialist and said they would do their own work up and rule out other diseases but wouldn’t tell me what those are and when I asked questions about what exactly this doctor does she didn’t want to seem to tell me. Almost like she was scared to tell me. I searched the doctor and she is neurologist that’s specializes in movement disorders is this equivalent to a neuromuscular doc? Would this be a doc who would rule out ALS?

 

[Clearwater AL]

Momma ,,you've been cleared of ALS. This is an ALS forum. Being just 32 years old
I'd bet you've read other threads how extremely extremely rare it is for one in
their early 30s to be diagnosed with ALS... something you have been clear of
by EMG and the Neuro saw no need to do another. What great news so many
others would so relieved to hear.

EMG is the gold standard for ALS diagnosis... along with NCS testing.

I hope your health issues are resolved soon so you can be the healthy Mom
your little girl deserves. But do get help with Health Anxiety, There really
isn't much more this site can help you with concerning ALS.