Back after a year

[Scared87]

Hello everyone,

Previous Thread: Terrified i have ALS

I had an EMG performed and was diagnosed with BFCS. I accepted my twitching as a part of me and emotionally got over what I had going on. I posted an update to the post I have linked above.

The past few months have been rough. My left forearm, shoulder, pec, and back have had significant atrophy along with continued atrophy of my left biceps. My left shoulder and forearm have started showing signs of weakness and things that were easy for me such as picking up a bucket of water or a feed bag is very difficult. I have to change the way I use my arm to move things around. My PCP was shocked to see how quickly these muscle groups atrophied and weakened since she last saw me and ordered an MRI of my shoulder and cervical spine.

Cervical MRI normal but shoulder MRI shows a "subtle tearing of superior anterior labrum with a small para labral cyst." My PCP has told me this type of shoulder injury could not cause atrophy this quickly or this severe. I guess next steps would be another EMG when I can afford one. Or maybe an Ortho that has worked with atheletes?

Even though I have weakness, I'm still able to do all the same things - they're just more difficult. The atrophy wasn't just noted by my doctor, others have noticed it as well.

Could ALS present like this? Body wide twitching for a year followed by rapid atrophy with minor strength loss? Again - the doctor performing the EMG said there was no evidence of ALS. I just don't know why else this would be happening.

 

[Nikki J]

Does it hurt? I do think seeing a neuro is reasonable but there are certainly other things that would be much more likely. Shoulder onset in ALS happens but is extremely rare. Also the atrophy occurred without significant loss of function which also points to something else

can you have appointments without incurring significant out of pocket costs? I am guessing emgs fall under your deductible. After 2 mris you are still not close to meeting it?

 

[Scared87]

Thanks for replying Nikki.

I am fortunate to make pretty decent money but we are single income and just cannot afford health benefits at this time. The EMG cost about $2,000.00 last time. I could probably swing it right now but might potentially put me in a bad financial spot.

Correct - atrophy has happened but overall function remains the same. My shoulder feels like it is described if you google a "SLAP Tear" - very unstable, droops, etc. Very consistent with the literature on that type of injury. I just cannot find evidence this can cause the atrophy. I posted over in the subreddit "AskDocs" hoping a neuro or ortho might reply and tell me, "yeah, this causes atrophy!" but no luck. A non-doctor (or as the forum says, "NAD" for "Not A Doctor") replied that he or she worked at the Mayo Clinic doing research. This person says it sounds like I might have "Faciosapulohumeral Muscular Dystrophy" or "Myotonic Muscular Dystrophy". I am not sure about making these leaps - though I did make one to ALS.

There is mild pain in certain situations. If I am playing dolls with my daughter my forearm and shoulder begin to tire very quickly just holding the toys but yet I can workout for an entire hour pushing myself as hard as I can.

Lastly I'll add that my myotonia has advanced as well. If I were to hit a muscle with my knuckle, the muscle seems to seize up and the "divot" stays there for some time. Though my twitches are random, everywhere, and never stop, I can control them. Simply lightly flexing will produce what looks like ocean waves throughout the entire muscle. Hard to describe but if you googled "muscle rippling syndrome", what I have looks like those in the videos - it is very odd. The Neuro said during the EMG that anytime he moved the needle, every muscle touched began contracting and producing fibrillations. Looking back, the "rippling" muscles have been present in my legs ever since I started working out. I never thought it was not normal until I developed the twitching elsewhere a year ago. Now this rippling can be produced in any muscle I choose.

 

[KarenNWendyn]

I would see a neurologist and an orthopedic shoulder specialist.