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leadtheway

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I really didn't want to post on here because I know those confirmed with this horrific disease have alot more on their plate. But I also recognize it is a great resource with alot of Knowledgeable people.

A little about me, 42/m very active and big into fitness and bodybuilding most my life. About 10 years ago had some tingling/weakness in right leg and hands/arms.. Went through all the MRi's and found herniated disc in neck..never confirmed why i felt in legs. But after traction and PT things got better and I've dealt with it on and off since. Fast forward to middle november this year. Started with same symptoms, that got a little worse but still sporadic depending on if i was sitting etc. Then developed difficulty swallowing. Went to see neuro. Ordered new MRI of brain, lumbar, Cspine and thoracic and had blood work done. Brain and thoracic came back clean (mild paranasal sinus diseason on brain mri) Lumbar showed slight herniation L4 and bilateral forimanal stenois l5/s1. Cspine is a mess (army ranger 12 years..lots of jumps and heavy rucksack) But severe bilateral stenosis, herniations and degeneration and spondylsis.

So had EMG/NCT in all 4 limbs. Diagnosed with cubital/carpal in hands but emg was clean and neuro said no muscle turnover at all. So felt good about that. Now on the swallowing issue, easily the most frustrating. I have GERD, i'm on medicine for it and i know if can cause alot of weird things.. So i had an endoscopy and Barium swallow test done.. A little narrowing and dysmotility on bottom 3rd of esophagus but nothing the dr seemed concerned about given my gerd and age.

I've tried to explain exactly my symptoms and they look at me like I'm speaking swahili. First, I don't choke on anything. I can eat solids or liquids, just feels like my throat is tight. When chewing i get this anxiety that I won't be able to swallow, but when i do, it goes down ok.. Sometimes i need a sip of drink on dry stuff but nothing much. Sometimes its worse than others and sometimes i barely notice. I notice more when just swallowing nothing. The other thing i noticed is my voice sometimes gets scratchy. But noone has complained of slurring. My tongue gets like this numb feeling sometimes. It's in the middle and sometimes the tip (i also have geographic tongue) Told neuro about it and he looked at tongue and said he didn't see anything concerning like fasciculations. I can move my tongue around and in and out and seems normal other than the pain. I also have widespread fasiculations but I'm not that concerned about that as I expect with the spine issues

Sorry for such a winded backstory. All that just to ask, With bulbar onset, how do most start noticing symptoms.. Do any of mine seem similar?

Thanks so much in advance
 
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KarenNWendyn

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Usually bulbar involvement from ALS starts with slurred speech that others can hear. Sometimes with difficulty swallowing, but as there are a zillion other far more common reasons why someone may have difficulty swallowing, an ENT or GI evaluation can help sort this out.

Gastroesophageal reflux (GERD), for example, is an extremely common condition that can sometimes cause difficulty swallowing, and occasionally with sensation of tightness in the throat, sometimes even with vocal changes. This would be more common in someone taking anti inflammatory medication for pain, for example.

Lots of bone spurs in the neck can also create pressure on the esophagus leading to difficulty swallowing.

With ALS in the bulbar region, there is no strange sensation in tongue or throat, no numbness, no scratchy voice.

Bottom line, you haven’t described ALS. If your neurologist doesn’t have answers for you, then ALS would be off the table. Consider seeing an ENT and/ or gastroenterologist.
 

leadtheway

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Thanks for the fast response. My first stop was GI, they did the endoscopy and swallow test.. I do have bone spurs in neck but they didn't mention it being an issue in the swallow test. My next stop is ENT. Dr google is such a bad dr and should be sued for malpractice, along with his partnet WebMD. I am hopeful its something that will be easily identified by ENT. The anxiety is horrible.

So basically the way you describe it is with ALS, you aren't even aware something is wrong, you feel normal, but people will notice the swearing and you won't know you can't swallow until you just can't. Not a sensation that you think you cant?
 

affected

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My husband died of bulbar onset and it was truly nothing at all like what you are experiencing. You are not describing ALS bulbar issues at all I'm very happy to say.
 

leadtheway

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And I'm happy to hear. Though I'm sorry for your loss. Such a horrible disease. God bless those of you that still come on here and help everyone
 

leadtheway

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Question about EMG results

I had a thread about Bulbar onset a couple days ago. I finally got the actual EMG reports. Though i really dont know what I'm looking at.. A couple places talk about reduced recruitment which I thought was indicative of MND?

from the report:

Concentric needle electromyography (EMG) the Right biceps and the Right flexor carpi radialis muscles
showed slightly increased motor unit amplitude, slightly increased motor unit duration, slightly increased
polyphasic potentials, and slightly reduced recruitment. The Left deltoid, the Left biceps, the Left flexor carpi
radialis, the Right anterior tibialis, the Right gastroc, the Left anterior tibialis, and the Left gastroc muscles
showed moderately increased motor unit amplitude, moderatelty increased motor unit duration, moderately
increased polyphasic potentials, and moderately reduced recruitment. All remaining muscles (as indicated in
the following table) were normal.


then looking at the graph i see some +2 . Does anyone know what that means?
attached is the screen
 

ShiftKicker

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Mod note: merged threads. Leadtheway, you can just keep posting here on your original thread. It makes it easier for people if all your information is in one place.
 

leadtheway

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Ok. I wasn't sure..thanks and sorry
 

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The absence of psw, increased insertional activity, or fibrillations is reassuring, so probably the other findings are not worrisome.

It’s best if you also include the summary/ conclusions usually printed at the end of the EMG report.

I believe this is the same EMG that yout neurologist had sad looked unremarkable?

Remember, the neurologist would be interpreting the results in the context of your history and physical exam. The history and physical generally guide the EMG interpretation rather than the reverse.

I believe you’re off the hook as far as ALS is concerned for reasons I noted previously.

If you still have questions, ask the neurologist.
 

leadtheway

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Impression:
There is electrophysiologic evidence for moderate, chronic, C6-C7 cervical radiculopathy affecting the left
upper extremity and mild, chronic, C6-C7 cervical radiculopathy affecting the right upper extremity with
concomitant mild median neuropathies across both wrists as seen in carpal tunnel syndrome and mild ulnar
neuropathies across both wrists as seen in Guyon’s canal syndrome. Additionally, there is evidence for
moderate, chronic, L5-S1 lumbosacral radiculopathy affecting bilateral lower extremities.


It was more of what do all these things mean. A follow up would be, is it possible to have a clean EMG for the limbs but still have Bulbar?
 

affected

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Please read the post titled READ BEFORE POSTING - that explains so much for you. (including posting in only one thread)

So far as your EMG questions, you should ask your doctor to spend the time explaining medical questions, rather than terminally ill people.

I'm so glad you are cleared of ALS, truly this is a great result :)
 

lgelb

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These findings signify you have some spinal column nerve damage and some wrist nerve damage.

The answer about clean limb EMG w/ bulbar ALS is no, especially given the non-specific symptoms you describe, which are not those of bulbar ALS. The suggestion to see an ENT or gastro if your issues continue to trouble you is a good one.

You can also ask for a PT referral to address the spine and wrist problems, and develop a regimen to try to slow their progression/improve your symptoms.
 

leadtheway

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Just wanted to provide update. Swallowing symptoms aren't really any better.. still not choking or anything, does feel like something stuck on one side in back.. feels like something draining from nose sometimes and feel like i have to clear my through alot. Saw ENT today and they did a scope through nose and didn't see anything. Only thing left is neuro so that obviously don't make me feel good. My neurosurgeon sent me for another C-spine MRI, i have spinal stenosis, osseous ridging, bilateral foraminal stenois on a few levels, also cord impingement in a couple spots as well as straightening of cpine. I'm not sure if any of that would cause. From what i understand the cranial nerves are important here. I still have full movement of tongue.. sometimes it feels like i burned it with coffee. Just to add, most twitching has stopped, just the random one in back of arms sometimes (but consistent with the disc issue) Not sure anymore...frustrating
 
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lgelb

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I'm not sure what you're not sure about. The imaging continues to show spine damage. There is less reason than ever to think of ALS. The EMG and imaging line up.

A back specialist to discuss what kind of further therapy, injections, etc. might help and how best to slow progression, would be one way to go, but you're still in the wrong place here -- excellent news. As for the burning tongue, sometimes it's just dry, esp. if you're worrying about that. You might try cough drops/saline sprays.

Thank you for your service, by the way.
 
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