Need a Second Opinion

[OrlandoMom]

I started having twitching in my calves on March 20, 2018. It was constant and a bit amusing at first- I would put my leg on my husband and make him feel it going crazy. After several weeks, I started noticing that my legs were getting a jello feeling, especially if I was walking on my hardwood floors in socks- like I couldnÂ’t lift my feet properly.

I started getting concerned and the twitching was keeping me up at night and sometimes in my left bicep too. I saw a neurologist after 10 weeks of non-stop twitching and she ordered blood work and an EMG on both legs and arms.

I got the results of all my tests today and the EMG was clear (except for nerve irritation in my L5-S1 area- this has hurt for a long time). My blood work showed “elevated muscle protein” levels. She said that this could be due to muscular myopathy/ALS, but that we couldn’t really tell that until I experienced pronounced weakness.

I asked if the EMG could be too early to tell ALS and another form of muscular disorder and she said it could be and that we will just have to keep an eye on it and repeat the test if needed.

I googled the blood test that showed elevated (Acetyl-L-Carnitine) and it said that LOW levels are indicative of ALS- not HIGH.

I feel like this neurologist has provided information contradictory of what I have read online about the EMG and the blood work, but IÂ’m not a doctor! I have a surgery coming up and long recovery from EagleÂ’s Syndrome and I donÂ’t have time to keep taking off work for more appointments to get a second opinion.

Has anyone else heard these kinds of things from their doctor? My twitching is now body wide and my right bicep has begun shaking whenever I exert it (even carrying my laptop across the parking lot).

 

[lgelb]

You're in Orlando, so I would get a second opinion from a neuromuscular center -- I'm sure some of our members down there will chime in. I trust you also got multiple opinions on the Eagle's surgery.

I realize that time off work is tough, but the answers to your current questions could affect the Eagle's surgery/your recovery, so I would want more definitive information sooner rather than after.

Best,
Laurie

 

[KarenNWendyn]

Twitches in and of themselves are common and of no concern. We get worried about ALS if there is failure of muscle function, e.g. inability to stand on one’s heels or toes, or inability to turn a key or fasten a button.

The normal EMG points away from ALS. Also reassuring in your case is that EMGs in ALS tend to be abnormal early, particularly in symptomatic muscle areas.

I had to look up Eagle Syndrome as it wasn’t familiar to me. Fortunately it is not a feature of ALS, nor is it more common in ALS. (It is a structural problem in the face/ neck area involving some nerve and artery compression and is associated with headaches, throat, tongue, and jaw pain).

The carnitine issue is mainly a problem if levels are low. Sometimes this can cause a myopathy (which has an entirely different appearance on EMG). It’s very different from ALS. I’m unaware of any significant disease associations with elevated levels.

Bottom line: ALS would not be likely given your presentation.

 

[OrlandoMom]

Thanks so much for the quick replies!! Yes, my Eagle’s Syndrome has been a pain in the neck (quite literally) for quite a while. My styloid bones grew into my throat and through the tonsilar area. It took about 5 doctors before I finally got that diagnosis! It wasn’t until I literally put my finger down my throat and felt the bones sticking out and brought it up to the doctor.
I often feel like my leg weakness is more of a perceived vs. actual/clinical. I just wish my doctor could have provided any kind explanation for 12 weeks of twitching after 34 years of not having anything like that! She seemed to infer that it would eventually lead to some kind of diagnosis given enough time and progression.

 

[KimT]

The only diagnosis constant twitching might be is benign fasciculation syndrome.

If you want reassurance I suggest you go to Mayo Clinic in Jacksonville. They use the team approach so if they think you are experiencing anything other than neuro, you'll get referred to a different specialty. I highly recommend Dr. Oskarsson from Mayo. If your insurance doesn't cover Mayo, try Dr. Pulley at Shands Jacksonville neurology. Both are excellent diagnosticians and are neuromuscular specialists.

 

[Clearwater AL]

OrlandoMom, you wrote,

"I have a surgery coming up and long recovery from Eagle’s Syndrome and I don’t have
time to keep taking off work for more appointments to get a second opinion."

That explains the twitches.

Hope the surgery goes well. Be concerned about that... not ALS.