CK mildly elevated, twitches/jumps, right leg atrophy

[Greyponycolt]

Hello,
As all, I’m desperately hanging on to hope that I have anything but ALS. I understand it’s on the table, but I’m digging for the chance someone has an experience like mine with a different outcome. Fasciculations started in lower abdomen- just a few gentle twitches in one spot spread to body wide within a week, cramps soon followed. I’d say I have as many twitches as I do “jumps”. It’s been 4 weeks now. My left hand feels off sometimes- hard to describe, possible weakness, possibly not as coordinated or strong as my right, but it’s not my dominant hand so unsure. I have dropped a few more business cards and glass slides than normal, but I am able to carry heavy buckets of horse grain and hay without issue.
My scariest discovery, other than learning what fasciculations are, is noticing a more prominent tibialis anterior tendon. I presume this is due to atrophy. I know I have lost muscle in both legs, and possibly both forearms. I realize this isn’t typical for ALS, but possible, from what I have read. Clinically,
I don’t think I demonstrate weakness yet.

My Creatine K level came back as 199.

 

[ShiftKicker]

Hello,

I'm hoping you've read here: Read Before Posting. It explains why twitching absent real clinical weakness can mean a whole list of issues. Assuming from the fact you have had a CK blood test, you have seen a doctor about your concerns. What are their thoughts with regards to the clinical exam you have had? What are next steps?

 

[Greyponycolt]

I’m 52. Clinical exam was scheduled with a local neuro who was very disappointing. My regular neuro couldn’t see me until May and I was growing very anxious, especially after developing some issues clearing my throat and difficulty initiating a swallow of saliva. I had a manometry this past summer where they discovered nutcracker contractions. He dismissed my swallowing issues, which could possibly be globus, but he didn’t examine my mouth or tongue. I was put on pregab three years ago for an odd neuralgia and dysphasia after having a virus. He also falsely reported that I denied any weakness or atrophy in my report.
He didn’t ask me.
Clinical eval was reported as normal- but it was not a comprehensive exam. Two minutes tops. Checked knee reflexes only which he reported as 2+. They seemed to jump higher than my last reflex test with my regular neuro who I am scheduled to see in May, so I am interested to see how she rates them.
He ordered the CK blood test, an eeg and an emg but I will not return to him for an emg after my experience. Hoping to get back into Lahey. My bad for taking the soonest appt.

 

[Greyponycolt]

Globus more prevalent- back of tongue feels swollen and dry, possibly “heavier”. Pharyngeal muscles feel tight after eating. Nighttime is harder for saliva swallows. Throughout the day, I am most often able to work through it so it is not in the forefront of my mind but it feels to be something progressing. I can still articulate well and sing a La La La scale. My concern is bulbar onset. Could it progress this way? It truly feels like my throat is closing.

 

[ShiftKicker]

Hi there-

Please return to your doctor if you feel you have a change in your symptoms or is interfering with your sleep. There are many things that can be explored to mitigate discomfort. There are also many reasons for your symptoms (please read the link provided above). We can only provide people the most basic of information. A clinical exam is where the most info specific to your situation would be the most helpful. You speak about feelings (heavy, tight, sense of closing), however, ALS is about actual failure. You do not report this, so you are better to look elsewhere at the many reasons for what you are experiencing and cease focusing on a single, terminal disease.

Take care