ALS and P/Q-Type Calcium Channel Antibodies

[Faith2021]

I'm currently in the process of trying to identify my neurological symptoms and obtain a proper diagnosis as to what could be causing them. Any help, insights, or guidance as to what may be going on, or to point me in the right direction, would be beyond helpful. I have read many posts on this forum and am grateful for all of your help. For context, I am in my early 30's, (male).

Symptoms:
Muscle Twitching:

• Exactly 5 weeks ago to the day, my right eyelid and my right quad muscle in my leg started to twitch
• Over the next couple days/weeks, I started to get more twitching throughout my body while at rest (Jaw muscle, temporal muscle in face, Foot, toes, calfs, quads, biceps, triceps, shoulders, fingers (on both sides of my body)... and even my abdomen (this has now lasted 5+ weeks and is still occurring all day everyday.
• The best description is popcorn constantly going off across my whole body. These are not full on contractions but light twitching / fasciculations firing at rest.
• Additionally, on occasion, my toes and fingers seem to sort of do a snake wiggle, without any input. They simply sort of slither back and forth when at rest in a slow manner.

HyperCalcemia & Vitamin D Deficiency:

• I went to my primary care physician and he didn't think too much of the muscle twitching. He ordered bloodwork and sent me on my way
• I received normal blood except for Hypercalcemia. I have had high calcium values in the past, and started researching and thought that it may be worth following up with a Parathyroid specialist (to rule out hyperparathyroidism).
• I also had a value of 30 ng/ml for Vitamin D 25 Hydroxy. (Lowest possible normal value. Ref Range was 30-100) - this along with my hypercalcemia has stayed constant in bloodwork across weeks to come. (I even looked back over the last several years and Hypercalcemia & lowest possible normal Vitamin D were present, for at least the last several years).

Thyroid/Parathyroid Specialist:

• The Dr ordered more bloodwork to check function of my Thyroid & Parathyroid. Everything was normal, but I continued to have high calcium. (Normal PTH Hormone and thyroid function tests, etc. Result: He did not think it was my Thyroid/Parathyroid, and said to come back in 6 months if Calcium is still elevated.

Neurologist #1:

• Physical Exam - Passed, no suspicion of anything nefarious. I asked him if there was a way to rule out MS and he obliged in ordering MRIs of the brain, thoracic spine, and cervical spine. - These all came back without anything indicating disease.
• He then thought that my high stress job and anxiety could be the cause and said that in 3 months I could come back to get an EMG if I felt like I still needed an answer.

Neurologist #2: (Highly respected medical hospital in US)

• I couldn't wait and I got a second opinion where the neurologist performed another physical exam stating that everything appeared as though I was healthy. I showed him several videos of my fasciculations and he ordered an EMG.
• EMG & Nerve Conduction Study came back normal, with nothing out of the ordinary to report.
• He ordered some antibody blood tests along with my calcium, magnesium and some other electrolyte tests. Everything was normal (all antibodies were 0.0 values), except for one: the P/Q-Type Calcium Channel Antibodies (my value was not flagged as abnormal but did have a value of 0.01 nmol/l).
• The reference range was =>0.02, stating I'm halfway to a flagged result, but my guess is since this is an antibody test, normal would be 0.0 like my other results?

I noticed that when I searched online I found the below study stating a low result of p/q-type calcium channel ab (.03-.09 nmol/l) did correlate with ALS. (see link below)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940238/

Swallowing:

• Over the last few days I have felt it is possibly more difficult to swallow/chew food, but I could just be overthinking as well... With all the back and forth between specialists and information it is difficult to understand if I'm having trouble swallowing or if I'm focused on swallowing and so something that was instinct is now being over-thought.

My Questions:

1. Could this be early ALS symptoms since I'm only 5 weeks into symptoms/muscle twitching?
2. Could I retest the EMG in 3-6 months and then be surprised with a positive result?
3. I got the EMG needle placed on my arms/legs, but not my bulbar region, could this be bulbar onset?
4. Does consistently High Blood Calcium or continual low Vitamin D correlate with ALS?
5. If anyone has any experience with the P/Q-Type Calcium Channel Antibodies tests in correlation with ALS any info would be greatly appreciated.

The constant muscle twitching is both anxiety causing and leading to increased insomnia, (which I have always struggled with).

Thank you for your consideration and any help/guidance.

 

[lgelb]

Low D, normal PTH and high calcium (though I don't know your numbers) can suggest parathyroid dysfunction and there are other diverse possibilities. I would make sure your internist is working through the differential. If they're not up to it, maybe ask about a referral to an endocrinologist.

But whatever the cause, if your electrolytes/hormones are out of whack, it's easy to end up with all the issues you list.

As to the rest of your questions, with normal strength and function: No/unlikely/no/no/there was no correlation shown in the study you mention, in which diverse disorders, as well as no other dx, were seen with the aforementioned antibodies. It was a cross-sectional study in which the only take-home was that the antibodies are associated with normal health as well as myriad issues. Clinical correlation is therefore key.

If the twitching is damaging your sleep, you could double-check all the aspects of sleep hygiene such as temperature, bed/pillow, clean filters, humidity, white noise, whatever's important. If the twitching is worse when you lie down and wakes you up, but improves with movement, you might ask about evaluation for RLS/PLMD and related disorders. You can also video your sleep to see how disruptive your movements are, as rationale for a sleep study if needed.

Best,
Laurie

 

[affected]

1 no
2 no
3 no
4 no
5 NA

Of course I said no, but mean not likely, as in it is as likely you will be hit by lightning tonight as this is ALS. Could you be hit by lightning? well yes. is it likely to happen? no

I do hope you start listening to the neurologists and let go of ALS and get to the bottom of what is going on. Obviously something is going on, it just isn't ALS.