Als or something else?

[Katie457]

Hi

My story starts with twitches that started in February and never stopped. Between then and now I’ve had on and off bad dry mouth, a feeling like my tongue is thick or I’m slightly slurring at times yet no one else can notice, leg cramps and hand cramps, numbness and tingling as well as fatigue and perceived weakness. I also lost about ten pounds due to extreme anxiety with all of this. I also have pain in my right the area eminence, blurry vision at times and fatigue. My legs and arms also feel heavy at times. Many of my symptoms began after a Botox treatment although my neuro is not convinced of any correlation.

My primary did a ton of autoimmune blood work and nothing. Sent me to neurologist and neuro exam came back normal (as in no weakness or abnormal findings) but based on my symptoms he did more blood work which all came normal as well as a NCS and a EMG on my arms and hands (due to me having perceived weakness and cramping and numbness in my hands at the time) which all came back clean. None in the tongue. He also did a cat scan with contrast which was normal. I’m waiting on an mri scheduled for next week. He says if mri comes back normal which he feels it likely will- I may have to think about some lexapro

Can I have a normal emg on hands and arms and still have als? With cramping and symptoms in those areas? Should I request another emg on legs since I also have intermittent quadriceps cramps? Or maybe on my tongue since I have some tongue symptoms?

Family history- grandmother passed from als in her 50s.

The stress is too much lately. I appreciate any and all advice and informations. I hope I am not breaking any rules.

 

[lgelb]

Hi Katie, I'm very sorry about your grandmother.

The answer to your questions are all, fortunately, no. ALS shows up on EMG in all or most muscles tested by the time it has reached where it would be if your problems were ALS-related. The Botox could have caused a cascade of symptoms that feed on themselves, but are not features of disease. Slurring that no one else notices is not slurring, but you can try a sugar-free cough drop, dry mouth/throat spray, getting more liquids throughout the day, etc.

"Extreme anxiety" is not a fun way to live. There is no shame in seeking counseling, even on line, to sort out what might be body and what might be mind, and dealing with any issues that might be contributing.

Best,
Laurie

 

[Katie457]

Thank you so much. Yes, after I get my mri back (which is basically to rule out m/s) I plan on seeking counseling and medication for anxiety.

Do you think the bulbar symptoms in tongue would warrant emg in that area? My grandmother had bulbar onset. The emg on the hands and arms was only about a half hour in length. At the time I was experiencing most difficult symptoms in that area (hands and arms). Just seemed so quick to me with all the symptoms I’m having. I am unsure if the neurologist would agree to another emg.

Sometimes it is hard for me to discern what’s mental and what’s physical at this point. I truly appreciate you taking the time to respond.

 

[Nikki J]

You had an emg in a symptomatic area. You wanting other areas emged now is very common here. You are postulating that your perceived symptoms in untested areas are malignant while coincidentally you have proved another area is benign as far as ALS goes. Is this logical?

30 minutes is plenty of time for an emg of hands and arms. It sounds like they did a lot of muscles for a rule out emg if it took that long. Did they happen to additionally do a sternocleidomastoid or trap? If they did either of those would be bulbar screening not that I think it was needed.

please let your doctor do their job rather than trying to direct testing