New symptoms that have me extremely worried

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Hi I appreciate that this forum is monitored by all of the pALS and cALS and express my absolute greatest sympathy to all of you and greatest wishes that better treatments are found and soon

I have been having some symptoms for a few weeks that are really panicing me

I am a totally healthy 37 year old guy and have had extremely long standing cramping and fasciculations in my right calf (like 10 years) after a climbing injury. It has basically never bothered me whatsoever. The cramps can be a bit painful but whatever, never was a big deal, would just get up and stretch them out when they happened.

Recently, about three weeks ago, for no particular reason I took a video of my right calf fasciculating after cramping and sent it to my dad (who is literally an ALS neurologist) and he was a bit concerned to see it and called me asking about weakness, atrophy, etc. I told him no, I didn't have any of this and I didn't really feel any concern about the issue, thought he was just worrying, and told him I'd had it forever and no problem.

The next day I did an 80km bike trip with a heavy pack which totally wiped me out. And after that trip my fasciculations have been constant to the right calf and have started to be constant in the left calf as well. I have also been noticing them on an intermittent basis in other parts of my body - both arms, my face, my back and shoulders. This and my dad's worry got me going down the rabbit hole a bit and I started doing what I usually do when I have any kind of question I don't know the answer to - type it into google. And quickly discovered that (according to google) the primary explanation for fasciculations is ALS.

I of course told my dad about this, he tried to reassure me, even flew out to see me and did a clinical exam which he stated was totally not consistent with ALS and plans to see me again soon. Basically indicated that there is absolutely no indication of ALS, that it doesn't whatsoever make sense with the onset of symptoms, that fasciculations are absolutely omnipresent in healthy people and there are many other illnesses that can cause fasciculations (ie. benign fasciculation syndrome). That he personally had a friend and neuro colleague who had to drop out of his training for 6 months because he started having fasciculations and was absolutely convinved he was going to die (and who is now totally 100% fine)

And this was reassuring for sure, but I still have been constantly reading about ALS, reading about stories of people diagnosed with ALS. I read a story of someone who had cramps and fasciculations and ended up getting diagnosed with ALS and literally the next day I started spontaneous having cramps - in my left upper extremity! These have gotten worse over a few days and now my left shoulder, back, and biceps feel quite prone to cramping which is a totally new thing for me. It sounds like it must be in my head but can your head do that?? Make you have cramps?

I have been thinking through my whole life, wondering if I should be making plans for next year, wondering if I should cancel the plans my girlfriend and I have been talking about to have a kid together (or do it sooner??). I am someone with basically no prior health anxiety or really much anxiety of any kind. But I am still super worried that I will continue to notice progressive deficits over the next few months and that this is just a weird and rapid presentation of ALS. I feel like while my anxiety is clearly significant and is probably not helping I can't believe that it is the sole cause for all the symptoms and visible signs I am having!

I am sorry for my rant!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
If your father is really an ALS specialist and he examined you and told you were fine and you didn’t believe him are you going to believe us when we say the same? I doubt it! You are also choosing to believe googled stories of strangers on the internet ( some of which are misremembered some even fabricated) over your own father who spent years in training and more in practice and has by now probably seen thousands of PALS. Your dad is right. go see your regular gp tell them everything you wrote here and follow their advice
 

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Yes thank you for the response Nikki. I am actually (I think) a reasonable person and I know that what you say totally makes sense but I can't shake this bad feeling!! If someone else told me the same thing I wrote I am sure I would tell them it is ridiculous
Maybe there's the problem, maybe I need treatment for anxiety as a primary issue
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,387
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Could be. Maybe you are anxious about something else that you have folded into this, like the child decision, which is a big one.

Yes, your head can make you have pretty much anything to do with muscles from the "feeling" front.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,596
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Please just stop a moment and think about the appropriateness of saying all this to people who are paralysed, may be using their eyes to operate their computer and are breathing with machines. Just stop and sit in that moment for a few minutes, breathing slowly.
Now go talk to your father, and get help for anxiety - show him what you have written here and what we have responded.
You can be helped, but you can't do this here.
 

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Thank you very much for your help. I mean no disrespect to anyone suffering with this horrible disease or to their families. My dad had indeed seen thousands of people with ALS and he thinks my presentation would be highly unusual but he has seen (a handful of) people present before with only fasciculations and cramping. And he can't give 100% reassurence which makes sense. So I am going to have some investigation including an EMG and imaging.

I am going to make a donation to ALS research today. I thank you all again for your participation in this forum.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Please let us know after you have completed your tests
 

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
So I did the EMG yesterday. Nikki as you requested I wanted to let people know the results

The neurologist/EMGer I saw yesterday did a very thorough exam and didn't find any abnormalities

They did nerve conduction studies and EMG and checked several muscles in each leg and one muscle (adjacent to my thumb) in the left arm as I said it had felt a little stiff. Additionally they checked paraspinal muscles

The EMG wasn't totally normal - they found fasciculations in both calves as well as occasionally elsewhere (which are easy to see and not a surprise). They also found evidence of renervation in the right calf with no active denervation, no fibrillations, no positive waves

The neurologist who did the EMG said he thought this was most consistent with an old injury aggravated by the cycling and not consistent with ALS. He said that he thought that the more generalized fasciculations were likely caused by BFS or something in that spectrum

I am happy to hear that but to be honest still remain a little bit worried. The fasciculations are just so prominent and psychologically bothersome

But I think I really have to commit to moving past this and to accepting what the neurologists are telling me

I thank everyone here for answering the questions of people who are anxious, stressed, but primarily the worried well
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Thank you for reporting. I am sure you have been told that fasciculations worsen or even happen because of stress. If you visit the subreddits for muscle twitch and bfs you will find 100s of people just like you

have a long and happy life
 

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Yes there are thousands of people! On reddit, on facebook.

All terrified and convinced that they are the one who has *** (which is what they type in place of ALS)

I am previously not someone who really had any health anxiety. But this has really affected me

Have to try to get my head right, trust what these expert neurologists are telling me, and put this behind me

As an aside I put it to the BFS groups that I would donation match 1:1 any donations they made to ALS research. A few of them did donate. I will put the same offer here to any worried people who are reading this and who send me evidence of a donation. (up to a certain max amount that I have pre-determined)
 

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Hi I just wanted to follow up again

You can see attached the report from the neuromucular consultation which clearly seems to be reassuring

My concern is that some things seem to be changing since I had that EMG about 5-6 weeks ago. Specifically the fasciculations which were totally constant in the calves have maybe gotten even worse and also seem to have moved into another muscle, one of the hamstring muscles. I guess it would be the biceps femoris as it seems to be on the lateral side of the knee and then runs up towards the middle side of the hip. I see that they didn't specifically check that muscle although all the ones they did check seemed ok (aside from minor abnormality in the gastrocs on the right)

That and I have a weird stiff feeling in that leg but I am still walking normally and seem to have normal strength.

Is this something that should concern me at all? I know that fasciculations alone aren't meant to be worrying but I don't like that this seems to be changing/progressing and the minor EMG abnormality does unsettle me a little bit
 

Attachments

  • 244509364_1046513569494030_2418637889724416596_n.jpg
    244509364_1046513569494030_2418637889724416596_n.jpg
    969.4 KB · Views: 23

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You know from the bfs groups that bfs people twitch anywhere and everywhere. It is not reasonable or necessary or even possible to emg every muscle. the electrophysiologists would spend their entire lives emging bfs people. Does it seem reasonable that the twitching muscles that were done were healthy but the one that was not done is not?

however if you have concerns why are you asking us? Call your neurologist or your father
 

worriedaboutit

New member
Joined
Aug 10, 2021
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
> Does it seem reasonable that the twitching muscles that were done were healthy but the one that was not done is not?

It seems.. I guess possible but unlikely. It seems like health anxiety driven reasoning trying to find a scenario where things are bad

A question on that though, I understand that usually weakness precedes twitiching but that in a minority of cases twitching precedes weakness. I also understand that EMG changes precede weakness by some period of time (?several months). Do EMG changes also precede twitching assuming that the twitching is caused by something sinister?

> however if you have concerns why are you asking us? Call your neurologist or your father

Reasonable suggestion. For some reason it seems easier to ask strangers on the internet but that makes sense
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,820
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
ALS twitches are the distress call of dying muscles so yes the emg should show if that was the cause.

but again your father is an ALS expert! I am not even a neurologist. Just someone who has lived with ALS one way or another all my life
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,596
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I think that you are pushing things a bit.
Constantly asking the terminally ill instead of your father who is an expert?
Why would you even think that is ok? (rhetorical, please go talk to dad)
 
Top