Seeking Advice: 7 Months of Symptoms

[Ezecon75]

I’ve reached 7 months into my symptoms and would like the veterans to weigh in on my case. My issues started back in late December where I spent Christmas Eve in the ER with heart attack symptoms. It turned out to an esophageal spasm related to ongoing GI problems. The pain and symptoms mimic a heart attack exactly, however, all the labs and EKG were very normal. Consequently, treadmill testing showed excellent exercise tolerance as they got my heart rate elevated to 150% of normal range for my age before ending the test.

Two days after being in the ER, I started experiencing my first muscle fasics just above my right knee. The fasics would start and stop for minutes on end and usually persisted for most of the day. Two days after the hot spot on the knee subsided, my left calf started up mainly in the medial head but occasionally in the lateral head. The muscle fasics are in my opinion persistent and constantly occurring (can’t verify that they exist while sleeping). About 2-3 months into my experience, I also started up widespread, but nothing as constant as my left calf which to date wiggles away. It doesn’t wax and wane.

I’ve seen my neurologist and had four consults with him spaced out about every 45 days. Each consult includes a shortened motor examination and deep tendon reflex check all of which are normal and haven’t changed over 7 months. I’ve had only 1 EMG/NCS study performed. It was mainly focused on the lower extremity (tibal nerve root). Insertion points were just above the ankle, the medial head of the calf muscle, and just above the knee. Both legs were done and the neurologist deemed the exam clean and normal. Paraspinals and upper extremities were not done.

To date the neurologist feels that the fasics are idiopathic and benign, but is sending me to USF neurology department for a second opinion since he can’t find anything. I had his nurse read me the dictation he was sending over and its about benign fasics. A second opinion seems a bit alarming, but in light of his report about benign fasics, it may just be that they want to put this to rest.

Anyway, I’m throwing this out to you guys to get your feedback good or bad.

 

[arizaz2021]

Ezecon75-

It sounds like a case of CYA for your doctor. I am not sure how many doctors are completely comfortable with the dx of BFS. Because ALS is so rare, they probably do not see enough situations in a local practice as would someone in a NMD clinic of sorts. I think the second opinion is just for verification of bfs and to ease your mind that this is not something sinister.

For the record, I have mentioned before that my reflexes have remained brisk and DID change after the twitching began. However, my neuro felt that the EMG he did up the entire right side of my body and into my tongue was good enough for him. So, even changes in reflexes may not point towards a horrible condition. I always cringe when people write that their reflexes did not change, while mine did. I do not believe it was just stress as they remain that way to date and never have been that way in the past.

In any case, you have so many good things to say to others. Remember your own wisdom when sorting out your thoughts and feelings on this matter. When is your appointment?

ariza_z2021

 

[garymills]

Ezecon75,

You stated:
"The muscle fasics are in my opinion persistent and constantly occurring (can’t verify that they exist while sleeping). About 2-3 months into my experience, I also started up widespread, but nothing as constant as my left calf which to date wiggles away. It doesn’t wax and wane."

I have been consumed by this same issue. But for me, it is both of my calves. The left is worse than the right, but they have both twitched constantly for over a year. By this I mean that I can never look at my calves and not see fascics. I don't always feel them, but they are always moving around. Just so you will know, I've had three emgs. The first was just of the legs, and showed fascics but nothing else at nearly the three month mark. The second was of the entire right side of my body including back and shoulders but no bulbar muscles. That was performed at about the 5 month mark. Again, it was essentially normal with fascics noted. No fibs/positive sharp waves, with a dx of benign fascics. The third was done in april (almost ten months after onset). Test consisted of arms and legs only. This test again was essentially normal with fascics noted. I didn't get a copy of the test results, but probably should because during the follow up with the neuro, he said they found something in both my triceps and I remembering during the emg, the dr saying -1 non-specific when testing my triceps. I was so wigged out during the exam I didn't think to have the dr explain, but as soon as he finished the emg, he said "well you don't have mnd, have you had you metabolic function tested?" That was such a relief as this dr. has worked at one of the most respected als clinics in the u.s. (Baylor College of Med in Houston, Directed by Dr. Stanley Appel) for several years and has seen a ton of als. After a physical exam, the Baylor neuro said no als and benign dx. Finally, all three have observed "brisk reflexes." Two of the three have linked that to anxiety.

So, I guess I spent all that time talking about myself just so you know that your case isn't that different than mine. Also, I sought out the last neuro after my regular dr (a neuro-muscular disease specialist) recommended that I get another opinion. That sparked a little bit of concern for me as well, so I sought out the most highly qualified neuro I could find in the Houston area. I now know that the only reason he recommended the second opinion was to ease my mind.

One last thing, during my visit with the dr at Baylor, he said that BFS is very common and can be caused by several different things. And he said that people with a high level of intelligence have the hardest time accepting the dx. I can tell by reading your posts that you could definitely fit that description. Sometimes we just have to accept without knowing the why. That has been the hardest thing for me personally.

Let us know how the appt goes.

Gary

 

[JCVanilla4125]

Hi Ezecon75,

I would say that seven months with no weakness or progression of symptoms in any way, along with multiple normal neuro exams and a normal EMG more than rules out ALS!

I know people worry about an EMG not being extensive enough, but think about it; if the EMG is normal in the area that you are having the twitching, why would you think it would be abnormal somewhere else. The neuros go where the money is (ie. where your fascics are).

It doesn't matter where you are twitching or whether it is intermittant or constant, what matters is no symptom progression!

Lastly, your neuro might simply be referring you to someone that he knows that has more experience with BFS than he does. I wouldn't try to read too much into it.

R E L A X !

 

[DJohnDavies]

Ezecon75,

I have been at this for almost 8 months now and I have yet to overcome the fear - despite a clean EMG, a couple of normal neuro exams and actual strength gains in thte weightroom for the last several months. So I would like to say that you should not worry about ALS - just like I would like to believe it myself.

I know how you feel about the 2nd opinion referral. My neuro is not a neuromuscular specialist but he did study as a resident under one of the absolute top ALS docs in the world. On my 4th visit to him - which was after my EMG - he told me I did not have ALS but that he thought it might be beneficial for me to see a neuromuscular specialist. I was baffled that he could sit there and tell me no ALS but in the same breath say "go see an ALS doc". My wife jumped in and asked if it was for my peace of mind only and he said yes but it still rattled me. I think his office sent my records to the NM specialist's office but they never called. I'm hoping he saw my records and saw no need to contact me.

Take care.