Another please help question

[JimmyP]

Hi All,

I apologize in advance if this frustrates anyone and I genuinely from the bottom of my heart appreciate any time you take to discuss with me. I have amdmiration for all of you and wish you the best.

I also promise to not argue and fight. I read the sticky at length and it gave me some reassurance for sure, but had a couple questions after reading.

I am a married 34 year old man who just had my third child right before the new year. Shortly after he was born I felt a little weak in my legs and shoulders and (I'm a bit of a hypochondriac) immediately began worrying about that which admittedly is an admitted overreaction.

About a week after the 'weakness' I began feeling twitching in my calves which quickly became some twitches in my thighs, feet, and arms. Most predominantly in my calves but every now and then another muscle group would wake up. This sent me to a full blown panic where I saw 2 different neuros (one was neuromuscular the other general) and both were confident it was not ALS but one agreed to do an EMG for my peace of mind.

He only did the left side (feet/leg hands arm) and said it was fine and didn't need to do the right. At the time I felt like twitching was similar in both areas. I asked to do the right calf just for peace of mind and he did it. He told me he saw one fasiculation in the exam in my hamstring but it was about the 'company it keeps' and was benign. The report says 10 of 11 muscles were normal and one had 'abnormal spontaneous activity' which freaked me out but called them and they assured me the abnormal activity was the benign fasiculation.

Since then (literally the next day) i feel like twitching decreased on my left side and increased on my right. Also, had 2 days out of nowhere of my left upper back twitching very consistently basically all day, but since those 2 days it's been like 4 days and that area hasn't twitched.

The 2 things that worry me are the use of the term 'abnormal' in the report and the randomness of my back twitches, although they ceased. Also a little concerned I only did one side (left) and just the right calf on the other. While i feel weak, doctors said no clinical weakness and I'm able to go to the gym and lift/run, I just feel more sore. Also, my back started really hurting recently. Lastly, even typing makes my forearms burn a bit.

Please let me know your thoughts on the reading of the EMG (one 'abnormal' activity ie fasiculation) and if you think in your experience I should keep searching for an answer or if I am overreacting.

Thanks so much. I just have 3 very young children and it's hard for me to put this behind me.

By the way there was nothing else notable on the EMG and the report said 'essentially normal consistent with original diagnosis of BFS'.

"essentially" freaked me out a bit. But recruitment and all of the other issues were normal. Only abnormality was the one abnormal spontaneous activity. Is this not to be worried about?

 

[lgelb]

No, you do not have to worry re one fascic (he is right about the company they keep, and this one had no such company), nor that they only did the one side. ALS shows up in multiple places on an EMG, including areas that seem fine. He has to say "essentially" because technically it wasn't 100% normal. But if you saw an apple with a single blemish, it would still be fine to eat, no?

BFS is pretty common and what you say seems consistent with it. If your twitching waxes, wanes and moves, that is more confirmation. Soreness on exertion can be stiffness that stretching, other bodywork, and some stress reduction/attention to sleep can improve. Enjoy your kids. Don't waste another moment worrying about ALS. Life is too short.

Best,
Laurie

 

[JimmyP]

This was a very kind response. I appreciate it.

To be clear, the calves 'twitches' basically remain consistent and feet and thighs next most, although they're less frequent. The other areas (back, biceps, triceps, forearm) definitely wax and wane.

Can I ask one follow up though? It will be my last, I realize the sensitivity of the subject honestly.

I feel these fasiculations pretty frequently, and am surprised they were calm when getting the test done. Trying to find the right way to word my question. Basically, my calves twitch all the time. Did they need to have twitched to see the other 'bad company' that they would keep? Or would you see that with or without the fasiculation. My last concern is that since I wasn't twitching during the test they couldn't pick up the other bad stuff.

Thanks VERY much.

 

[Nikki J]

No it doesn’t matter whether you twitched during the emg. The emg is looking for a particular pattern in ALS that demonstrates dead and dying motor neurons. If that is happening it is going to be there twitching or not. Fortunately you did not show that at all

best of luck for a long and happy life

 

[JimmyP]

thank you so much Nikki and Laurie. I know this could be frustrating or worse yet painful - but I promise with my sickness it's really tough for me too.

Half of my brain accepts what I'm being told that this is a psych issue (not my first fight with hypochondria) and I have my first appointment with a very highly regarded therapist in this area on 2/18.

Still - the other half of my brain fears als, despite the reassuring info above. My muscle twitches have not gotten better and my calves have begun to cramp up after activity, which scares me.

Further, and bear with me - i started overthinking my health history. Winter of 2017 i took a hard hit to the head while skiing, and probably was concussed. A month or 2 after that, I noticed my ears clogging up and despite trips to numerous ENts the found nothing wrong besides occassional ear wax or very slight eustachian tube swelling. To this day the ears remain 'full'.

I searched in this forum and saw 2 gentlemen, big mike and another gentleman, told personal anecdotes about their experience with clogged ears long before an ALS diagnosis.

My LAST question is two-fold. Should the calf tightness I'm experiencing cause me more ALS concern despite the mostly normal EMG (1 benign fasic).

Secondly - has there been any more discussion about clogged ears with ALS? I'm nervous about potentially this shot to my head being a trigger event that led to immediate ear clogging etc and then now the twitching/tightening 3 years later.

Thanks so much, all the best to all of you.

 

[Nikki J]

Just because someone had something doesn’t mean it was related to ALS. ALS is related to dying motor neurons You can list practically anything and find someone who experienced it before or with ALS and also people without ALS who had or have it. Correlation is not causation nor is it always a symptom.
calf tightness is not worrisome either

you said in your first post you promised not to argue or fight. You said your second post would be your last.

 

[JimmyP]

Your frustration is heard and understood. Don't want to give you another empty apology.

I obviously have a problem and have therapy lined up, I just have to wait a long 3 weeks for that to begin.

My calf stiffness got me more concerned than the twitches as that seemed to be a little more telling than benign twitches, but I had a clean EMG outside of the fasic so I guess I have to trust that. For your time and frustration I did make a donation (sizable by my standards ha) to an ALS charity that goes directly to research. I will continue to support that community as well, as it seems that we're on the 10 yardline for the last year or so with some really promising treatments and we just need approval. I'm committed to following that, spreading the word and helping where I can.

Thanks again for your responses. Best of luck in the future.