Old 03-09-2019, 08:21 AM #1
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Default Bulbar ALS?

Thanks to you all for taking the time to read this post and answer my questions.

I'm a 42 year old Male. For the past month my tongue has felt extremely swollen and sometimes sore towards the back. Occasionally I will get tingly/crawling feelings on the side. It is difficult for me to pronounce certain words. Especially words that contain the th sound. My wife insists that she doesnt hear any speech issues. I can still wiggle my tongue side to side, move it up and down and stick it out, lick my lips etc. I also have a constant twitch in my left check and twitches throughout my entire body. Aside from this I have weakness in my hands on both sides. Not enough to keep me from doing daily chores but enough to make me clumsy. My left leg is numb in the back and my left heel is as well. This doesnt stop me from being able to walk on my toes and heels though. The upper leg numbness has been present since my last bout of sciatica a couple years ago. The heel is more recent.

Does any of this say ALS? I have an EMG/NCV scheduled for the end of the month. Also, how far into the disease would breathing issues show up? I have nights when I feel like I just can't get enough air.

Thank you for your time and enjoy the weekend!
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Old 03-09-2019, 01:45 PM #2
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Default Re: Bulbar ALS?

Have a read here: http://www.alsforums.com/forum/do-i-...-symptoms.html It addresses such things as numbness, swelling, pain, tingling, etc. These sensory issues are not considered part of the pattern of ALS symptoms. Not sure what it is that might be causing your symptoms, but I don't think ALS is something you have to worry about.
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Old 03-09-2019, 02:47 PM #3
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Default Re: Bulbar ALS?

Thank you for the reply!
I did read the sticky before I posted. But I had read about some people feeling weird feelings in their tongues before they were diagnosed. So I just thought I'd ask to be sure. One last question before I stop bothering you all. I have times when I find it hard to swallow anything. Solids, liquids, anything. It's as if most of it will go down but some always remains in my throat until I force it down or drink something. I apologize for my ignorance but its either ask here or consult Dr. Google. My PCP seems to have no patience for any kind of questions. I'm not normally an anxious person but when my tongue felt weird, I jumped on google (HUGE mistake) and all that came up was ALS. Makes me think the internet needs a new sorting system to keep from scaring everyone's pants off!
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Old 03-09-2019, 04:01 PM #4
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Default Re: Bulbar ALS?

If your wife does not hear the speech issues, it is most likely that dryness, allergies and/or GERD contribute. A throat spray, sugar-free cough drops, and/or a nasal steroid, combined with avoiding acidic foods at night, are all worth trying. Of course, these same factors can contribute to perceived swallowing difficulty.

As for not feeling that you are getting enough air at night, Google the Epworth sleep inventory and see if you should be perhaps screened for sleep apnea.

Sciatica can move around and extend. Your PCP can write an order for physical therapy that may help.

If your PCP doesn't like questions, it may be time to find another. But we don't see ALS presenting as you have described.

Best,
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Old 03-09-2019, 04:47 PM #5
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Default Re: Bulbar ALS?

Thanks so much to you both for your answers. You have helped ease my troubled mind!

I agree about finding a new PCP. It's something I intend to do but living in such a small town, the choices are limited. Having crap insurance doesnt help either. The ones that take it have a waiting list of months or they arent taking on new patients. Gotta love the way things are!

Again, thank you all for your patience and I hope you enjoy the rest of your weekend. Hopefully the weather where you are is as nice as it is here.
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Old 03-11-2019, 06:36 PM #6
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Default Re: Bulbar ALS?

One other quick question. I'm having my EMG on the 19th. If the Dr. only tests my arms and legs and it comes back clean, is there still a chance of bulbar? I ask because my PCP says there is no need to check my tongue/throat area. I just want to know 100% after this test is done so I can get on with my life. My kids need me focused on them and not stressing over my health.
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Old 03-11-2019, 08:01 PM #7
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Default Re: Bulbar ALS?

You state “my tongue has felt extremely swollen and sometimes sore towards the back. Occasionally I will get tingly/crawling feelings on the side.”

Good news. ALS is about failing, not feeling. People with ALS involving the bulbar region don’t notice swelling, soreness, tingling, or crawling feelings. Those are sensory symptoms and are not part of ALS. Same with the leg numbness.

If you have weakness in your hands and twitching throughout your entire body, then an EMG on your extremities would be sufficient to rule out ALS, bulbar or otherwise. Please believe and accept the results when they come back negative.
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Old 03-11-2019, 08:16 PM #8
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Default Re: Bulbar ALS?

Thanks so much Karen! That was what I was hoping to hear. I'm a firm believer in testing and that doctors know more than me so, the emg will give me the peace of mind I need.
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Old 03-12-2019, 02:19 PM #9
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Default Re: Bulbar ALS?

All day today I've had a pain/tired feeling in my jaw (kind of goes from my ear down into my cheek). Its something ive never had before and is now in addition to the tonge issues I've been dealing with. Does ALS cause your jaw to feel tired or painfu? Again, I'm sorry for all the questions but Google is no help and my EMG isnt for another week. I have a feeling it's going to be a long week. Thank you all in advance for the provided information.

Last edited by Dadof2 : 03-12-2019 at 03:13 PM Reason: So many typo's.
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Old 03-12-2019, 02:30 PM #10
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Default Re: Bulbar ALS?

No. Your symptoms simply do NOT sound like ALS. Log off the computer, take a breath, spend time with your children and report back AFTER your EMG. There is nothing else we can offer you at this time.
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Old 03-12-2019, 02:44 PM #11
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Default Re: Bulbar ALS?

Thank you Tracy!
I will do just that. Or at least try too. I've never had anxiety over something like this before.
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Old 03-13-2019, 11:07 AM #12
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Default Re: Bulbar ALS?

I just saw my PCP and voiced my concerns about ALS and she basically said that she cant rule it out because the symptoms are progressive and we have to wait and see how things play out. Now I'm even more anxious about it.
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Old 03-13-2019, 11:14 AM #13
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Default Re: Bulbar ALS?

Believe it or not, your PCP knows less about ALS than we do.

We’ve done our best to try to reassure you, apparently to no avail.

If it takes an EMG, then so be it, but please believe the results when they tell you it does not show ALS.
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Old 03-13-2019, 06:02 PM #14
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Default Re: Bulbar ALS?

My husband has bulbar , he had no tongue swelling nor a thick tongue. His speech was his only symptom.He had no pain whatever .Count your blessings .He can’t speak or eat anything by mouth .
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Old 03-14-2019, 01:32 PM #15
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Default Re: Bulbar ALS?

Thanks for the replies. I'm doing my best to keep up with my normal routine between now and my EMG on the 19th. I do however have one further question. In bulbar onset, does atrophy of the tongue shown up before or after slurring and tongue weakness starts? The right side of my tongue seems to be much thinner than the right. When I tent my cheeks both sides seem to be strong, I can push on my cheek while tenting and there is no give on either side. I've just become hyper aware of every non-symetrical are of my body since all of this started. The 19th cant get here fast enough.
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