41 Yr old Male very concerned Bulbar/ALS

Hello, I would like to share my sympathies for all those dealing with ALS either as a patient, family member or caregiver(s)

Looking back my concerns started about 7 months ago. I noticed a buzzing feeling in my head and body to an extent. It was coupled with a pronounced heart beat. About 4 months ago a general feeling of malaise, poor sleep, night sweats, and increased shakiness. About 1 month ago I noticed full body twitching, which caused my first ever panic attack. I generally do not have anxiety until now...I then had a complete burn out, very fatigued in all limbs, body. Took a couple of weeks of feeling less fatigued.
I went to see a Neuro at Mayo here in Scottsdale, the MRI, CT, EMG (on limbs only) came back clean. Indicated best thought was BFS and burnout and anxiety. At the same time, I decided to work with a functional medicine dr. who also specializes in Neurology. Both do not feel I have a MND. I have been very open with them on my concerns with ALS. In the past couple of weeks, I have had twitching now migrated to my head, neck, face, lips. No speech issues per se. I am having a hard time finding the right words and articulating, so I am careful not to speak to soon until I know. In addition, I have an an unexplained nasal inflammation ( my allergist appointment confirmed) that triggers post nasal drip. Having had allergies all my life, this is different as it is not accompanied by congestion or mucus in the nasal cavities. I also have noticed the past few weeks that I get winded (if that is the right word) when I speak mid to long sentences. Also singing is tiring and difficult to hit many of the notes. Had my breathing capacity in and out tested and it was fine. This feels more like vocal volume type issues in my throat. Neck pain/weakness is still present, some days worse than others, as is unexplained leg and arm weakness. Arms get tired from brushing teeth, etc. For example, difficult to hold arms above my head for any length of time. Since my real notice of symptoms, I have done a 180 on my diet. Although realtively healthy, (5.6 140 lbs) I cut out all coffee/caf, Daily, Gluten, sugar, alcohol. Essentially a complete system reset. I am taking Mag, B's, C's, D's (did not pay attention to vitamins prior) essential fatty acids, lots of greens and low sugar fruits, all organic to include meats and proteins. While changing all this, I do know it takes time, but I am marginally better, twitching and slight tremor with heart pounding has not changed.

I am very concerned that the Mayo Neuro did not test for Bulbar symptoms and that my first EMG on limbs/torso was too early, and would not pick up early onset bulbar? I am taking things to naturally calm me down, however, I have completely convinced myself that I have early Bulbar onset and it is only a few more months for a new test to confirm. I felt that my Neuro at Mayo was not taking it seriously as when I first was examined prior to EMG and MRI, he snickered and said, "I don't think you have that to worry about." Am I on here for assurances? no, I know that is not possible. However, I think writing this down, and receiving feedback will help. Any thoughts, or does this sound similar to any PALS experience before Dx?
Thank you for reading my post.

Nothing sounds similar to any of my family members or to the stories of PALS I have read here and elsewhere. Your limb EMG would not have detected isolated bulbar but your symptoms do not sound like bulbar at all ( or limb onset for that matter). Please follow up with your doctor. Also be so kind as to read the sticky for this subforum ( you clearly did not as you chose to post in General Discussion instead of here)

Thank you for the reply Nikki, sorry to hear about you and your extensive family Dx. I am a newbie to this site, so I apologize for posting in the wrong area. BTW, what is a Sticky?

From this page look at the top click on this subforum ( do I have ALS) that will bring you to the thread list for this subforum. The sticky is first on the list and says sticky

Agree with the doctors. Sounds like classic anxiety. Doesn't sound at all like any ALS I've ever heard of.

Yes, first read the sticky at the top of this subforum. It will give you peace of mind, hopefully.

From someone whose husband DOES have bulbar onset ALS, nothing you describe sounds anything like it. My husband only had an EMG performed on his limbs, but was diagnosed with bulbar onset due to his tongue failing. His only symptom before diagnosis was gradual slurring of speech, he began sounding drunk to everyone around him. Your EMG was clean........congratulations, no ALS!

Sounds like your body is responding to the stress of your anxiety; twitching! Yes, stress of worrying can cause twitching. Get help for your anxiety before it consumes you. Good luck!

Thank you Nikki, noted.

Atsugi, thank you for your note. The reason I am concerned about the bulbar onset is the unexplained reduction in nasal air wary, not sickness or uncontrolled allergies which even confused my asthma specialist. I understand those muscles are affected. When I couple that with fatigue from speaking medium length sentences (needing to take a breath sooner than normal in between) and having neck weakness and inability to speak certain notes (volume is also low unless I am think about raising it for the purpose of general conversation) and yes I have constant twitches all over my body at this point, and increasing my bulbar region, it appears reading other PALS onset story, this does not sound to out of norm?

Thank you ECpara, sorry for what you and your family are going through.. I completely agree, and as Anxiety is new, I have yet to learn how to properly deal with it.

I have spent more time reading PALS onset symptoms, to include early onset bulbar that starts with breathing issues. While a very small % of the ALS Dx, I have read that twitching can be present first in these instances. In addition, difficult to speak long sentences and winded is also noted. As I covered above, this appears to be the issues I am having. This includes what is best described as nasal inflammation that is not getting corrected should it be triggered by allergies. Constant clearing my throat or voice sounds raspy. One thing to ask, I have had general malaise like my body has been fighting a sickness for some time. Was this a symptom noticed in early bulbar onset?

Not in my husband's case. He didn't feel sick at all. What you are describing is not the norm. To be honest, I've never read anything what you are referring to. Google can come up with some not so reliable information.

Canaz read the earlier replies again and focus on this:

Clean EMG == no ALS.

Go work on the anxiety thing.

Try reading up on Spasmodic Dsyphonia (I seem to have issues with it), here's a link

Spasmodic Dysphonia

From the site "Symptoms of spasmodic dysphonia generally develop gradually and with no obvious explanation. Some people with spasmodic dysphonia also have vocal tremor, a shaking of the larynx and vocal folds that causes the voice to shake. Although the risk factors for spasmodic dysphonia have not been identified, the voice symptoms can begin following an upper respiratory infection, injury to the larynx, voice overuse, or stress."

And from Wikipedia

Notable cases

Scott Adams, the creator of the comic strip Dilbert.[21]
Frank Allison, musician, leader of Frank Allison and the Odd Sox[22]
Johnny Bush, country & western musician and songwriter[23]
Keath Fraser, Canadian author who has documented the challenges and treatment of his condition in the book The Voice Gallery: Travels With a Glass Throat (2002).[24]
Sjors Fröhlich, former Dutch radio presenter, who had to give up his job as a presenter due to this disease.
Chip Hanauer, American hydroplane racing driver[25]
Robert F. Kennedy, Jr.,[26] son of United States Senator and presidential candidate Robert F. Kennedy, political and environmental activist
Fred Lavery, a music producer, writer, musician, and recording studio co-owner from Cape Breton, Nova Scotia. Was lead singer of recording group Road and was later a solo artist, but developed the condition in the 1980s, and was forced to quit singing. Receives injections to keep voice fairly normal.
Emily Lim, award-winning author of children's picture books.[27]
Mary Lou Lord, indie folk musician.[28]
Andy MacWilliams, former radio broadcaster for the Cincinnati Stingers, Chicago Blackhawks and Cincinnati Cyclones.
Darryl McDaniels of the rap group Run DMC[29]
Lianne Morgan (singer/songwriter, in the first line up of the Spice Girls)[30]
Diane Rehm, host of the The Diane Rehm Show on National Public Radio (NPR).[31]
Kyle Stokes, National Public Radio Education Reporter
Mark Stuart, American Christian rock musician (Audio Adrenaline)[32]
Linda Thompson, British folk-rock musician.[33]
Krzysztof Jaryczewski (singer), Polish rock musician. He was best known for performing in Polish Rock band Oddzial Zamkniety [34]
Jimmie Rodgers, American pop musician, best known for his version of "Kisses Sweeter than Wine."[35]
Jason Albert, Lead singer of the country music group Heartland.
Jaimee Vitolo, contestant on the 5th season of MasterChef_(U.S._TV_series)

Click to expand...

Initially it caused me to slur words as it threw off my speaking but lately has morphed into more of a stress/fatigue induced temporary condition that manifests as velopharyngeal incompetency.

It's very weird and disconcerting, I'll try to speak to my wife about something stressful and within a few words am talking with a very nasal tone and having a hard time getting enough breath to speak. BUT I can walk into the next room and speak to the dogs in my old normal voice... This obviously confirms that the issue must be my Wife's fault as her sub-par listening abilities (compared to those of the dogs) are evidently the triggering mechanism...














j/k

LOL, notBrad, you get a free pass on blaming your wife!

Is the "ALS is about failing, not feeling" saying true for the bulbar symptoms as well? I feel like it's become hard to speak lately - i'm not slurring very often, but my speech is being stopped because I feel a strain under my tongue and it's making me stop my speech after a sentence or so. Sometimes it's on the sides of the tongue that I get a feeling like a swelling....

It applies to all forms of ALS. It is not a "sensory" disease no matter where it begins. My husband is bulbar, he presented with slurred speech. He didn't feel a thing. Try as he might to talk properly, he sounded like the town drunk.