Very Scared Bulbar Als??

[Malthoff8]

Hello everyone. I will try to explain what I have been going thru and any advice would be appreciated. I’m a 38 year old male. I started having dizziness in December 2017.

I then had some left sided facial tingling around January 2018. For this my doctor ordered a Mri of brain and cervical spine. All normal. Blood tests normal. Went to an ent and found out I had some vestibular issues.

Then in late February 2018, I went thru a stage of insomnia for 4 weeks. End of March I was put on REMERON and Zoloft and I finally got my sleep back. I then had a visit to a neurologist in same month and I had felt like I had left hand and left arm weakness. He tested and said let’s wait a few months and come back. In April 2018 I was diagnosed with severe sleep apnea. I started cpap on May 1st of 2018.

About halfway thru the month, I notice my speech was a little different. Also, I had a major increase in saliva and my swallowing feels different. I seemed to be slurring a lot. My wife said nobody else hears it and none of the doctors commented on it. I then had an EMG done on left arm and leg in June 2018. He was supposed to check my tongue, but he told me he found nothing and there wasn’t a reason to test tongue.

To myself, my facial muscles and speech have continued to get worse. I have twitches on lip, tongue twitches when protruded, and I get twitches below both eyes. I saw my neurologist on September 13th 2018 and he told me that everything still looks normal and my speech is fine. It is now October 12th. I feel it is so difficult to speak. I feel my tongue goes to roof of my mouth when I talk causing me to slur words. My lips seem to not work correctly because my pronoun ciatuon is horrible with p,m,n,t, and d sounds. It sounds like I have a lisp now too. Also , I sound very breathy too.

I requested another EMg on tongue and limbs. My neuro kind of laughed, but did put in a referral. My questions are
1. Does this sound like Bulbar Als?
2. Could I have bulbar speech problems and be the only one to notice it?

Please, and advice would be appreciated and I thank you so much for taking your time to answer and I hope and pray I did not offend anybody.

God Bless you all

 

[Atsugi]

No ALS of any kind.


Is your PCP involved? A neuro can only do neuro, and you might need other specialties. Your PCP is trained to make those decisions.


Good luck. But nothing you mention sounds like ALS at all. See the sticky post stuck to the top of this sub-forum. It's called "Read Before Posting" and answers most all your questions in detail.

 

[Malthoff8]

Thanks for the quick response Atsugi. I also have some balance issues too since about March 2018 also. I can do all the stand on heels and toes fine. My tongue and lips are what really bothers me. It seems like my tongue is clumsy and always goes to top of the roof of my mouth when speaking, causing what I perceive as slurred speech. My mouth and lips seem like they don’t want to open far to articulate words. I am always clearing my throat too. My pcp rights it off as anxiety.
I guess my next question is if i started having speech issues in May of this year, by now others would definitely notice, correct? Thanks again for your time and info.

 

[lgelb]

So the speech/slurring issues you perceive, are not perceived by others. That isn't bulbar ALS. No, they didn't need to EMG your tongue to be able to say that. You are clear.

Saliva after starting CPAP? Tweak the humidifier and possibly settings. Check your CPAP and furnace filters. Try a new mask. Drink more liquids.

Swallowing feels different? Dryness, allergies, GERD are all things to consider. Try Biotene, saline or an herb mouth/throat spray. Biotene also makes toothpaste, etc. Maybe some papaya or pineapple juice just before you brush at night.

Are you still on the Zoloft/Remeron? They can cause dryness and related issues as well. If you started them solely for sleep, you should be titrated down/off now that you have started CPAP.

Best,
Laurie

 

[Malthoff8]

Thanks for responding Laurie. I am trying a new cpap mask next week. No one has told me about my speech yet, but I feel people are noticing my speech to be different. In Als, does your tongue curl upwards often. My speech is slower and words get botched up constantly. I feel my lips are slower and my face constantly hurts. My voice is much softer too. Is it just too soon for others to see and only I notice? Anymore advice would be appreciated. I truly thank you for your responses.
God Bless you all

 

[lgelb]

No, ALS doesn't work that way. If your speech were truly impaired, others would notice, especially your wife!

Something else is at play. Whether your vestibular issues are impairing your sensation, the CPAP has unmasked other sleep issues, you're suffering drug-related side effects, one or more of my other comments bears fruit, etc., none of that relates to ALS.

So you ask for advice and it is this: keep working with your docs, ask that each of these possibilities be ruled out, make sure your PCP, neuro and ENT are talking/sharing records, etc.

Not having ALS is very good news.

 

[Malthoff8]

Thank you Laurie for your insight. I am going to see another neurologist on December 5th. I need another opinion for my own crazy mind. I will keep you guys updated. I wish both of you strength and peace. Thanks so much for responding to me quickly and giving me your time. May God bless you both.

Matt

 

[Malthoff8]

Hello. I apologize but I want to bother you with one more question. Does Als cause your mouth to not to open wide or cause pain when talking. My tongue, cheeks, and jaw hurt a lot especially when talking. This seems to cause my tongue to be crowded and clumsy in my mouth. Thank you for your time.

 

[Atsugi]

Doesn't matter what your mouth does--you don't have ALS.
You also didn't read the "Read before posting" or you would know the answer.

 

[Malthoff8]

Thanks Mike. I did read it, but my anxious mind only picks out what it wants. I appreciate your time and I will try to not message till after my appointment on December 5th. Hope you have a good rest of the weekend. God Bless

Matt

 

[Lscott71]

Others would notice your speech long before you do. I noticed my husband was slurring his words and someone at a work meeting thought he was drunk.

 

[Malthoff8]

Thanks for your info Lscott71. I pray for strength and healing for you and your husband. Take care. Matt

 

[Malthoff8]

I wanted to ask one more question. Every time is stick my tongue out, it tends to always be in this “u” shape like in my picture. Is this atrophy? Please advise. Thanks, Matt

 

[KarenNWendyn]

Are you serious?

You don’t have ALS.

 

[Malthoff8]

I’m sorry Karen. I’m not trying to waste anybody’s time or be insulting. I’m just an anxious mess. I pray for strength and healing for you and everyone.