Newly diagnosed and have question

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ConcernedSpouse

New member
Joined
May 10, 2019
Messages
3
Reason
Loved one DX
Diagnosis
03/2019
Country
US
State
AR
Spouse diagnosed with Bulbar onset with only EMG and MRI and short examination. The MRI says a few small white matter spots but nothing else. I don’t think the neurologist has ever diagnosed ALS before as he says he thinks it’s ALS. Spouse has slurred speech, trouble swallowing, excess saliva. No tongue fasciculations, although have seen a few small ones on inner side of right foot. I’m not convinced it’s ALS, I could be in denial. Had some speech therapy and speech seemed to improve some since attending sessions.

I have looked online and can’t seem to find an answer to my question: can you have Bulbar onset with out tongue fasiculations?
 
Hi there. I’m sorry you and your spouse are having these troubles.

We always recommend a second opinion, particularly in cases where there may be uncertainty. Preferably there should be an evaluation by a neuromuscular disease specialist.

A few things about your husband’s case — I wouldn’t expect improvement in speech with ALS, though occasionally some symptoms may fluctuate, especially early on. Tongue fasciculations aren’t essential for making the diagnosis. Not everyone with ALS notices fasciculations.

MRI can be helpful in ruling out other conditions that may mimic ALS, but MRI is generally not used to diagnose ALS. White matter lesions on MRI are notoriously non-specific.

If you can get a copy of the EMG summary and conclusions and post them here, that would be helpful. Be sure to black out any identifying information.
 
Yes, please post the EMG, but Karen is right -- you need a second opinion. The UA clinic number is 501-686-5135. Or if you can go to Louisiana or Mississippi, you can see clinic options here.

Best,
Laurie
 
Thank you for responding. Spouse also has type 1 diabetes.and was told he has silent reflux. I’m wondering if it could be esophageal issue causing slurred speech and constant need to clear throat. Any thoughts?
 
Throat clearing, possibly, but for slurred speech the connection would be less clear. Is his diabetes well-controlled? Has he changed meds recently?

Again, we would be more helpful if we could see the EMG report.
 
Diabetes can be associated with all sorts of small blood vessel disease which can lead to neuropathies and stroke-like symptoms. It’s possible the slurred speech can be the result of this. The EMG can help pinpoint whether or not a motor neuron disease is in the picture as well.
 
Thank you for feedback. Will try to get EMG info Diabetes not well controlled. Has insulin pump but still has highs and lows often. No med changes other than he stopped taking Crestor, the last couple of months.
 
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