13 months of symptoms with cramping, fasciculations

[CrimsonCloud]

Hello,

I am a male 35 years old with military background lookin for answers or the very least similar situations like mine. I am 1,82, 120kg, so BMI over 30. I have read the sticked post.

Symptoms
My problems begun in June 2022 when I started with fasciculations in my biceps. This lasted for a couple of months. For 2 months there was a period of remission. Starting with December 2022 full blown fasciculations all over the place but with hot spots in calves. Furthermore for the last months I'm having mid cramping in triceps, inner thigh, abductor pollicis brevis, calves. Only once I have experienced a severe one in calves, the famous Charlie Horses. I do not have weakness. Other then the fact that I have tendonitis in my thumbs because of my stupidity as I was testing them all day long.

Tests
I have had 4 EMGs. Lower legs, both arms, chin, trapezius, biceps, triceps, abductor pollicis brevis, deltoids on both sides. Last EMG was on 18 of May. All of them were normal. 3 of them registered fasciculations in calves but doctors told me completely normal for a 35 years old. NO denervation-reinnervation, no PUMS, NO FIBS/PWS. I also had over 5 normal neuro exams. ( reflex and strength ). I was also tested for Motor evoked potentials which came back clean. For blood test I have had cancer bio markers done, hepatitis, viruses, electrolytes ( from blood not cellular level ), vitamins, thyroid function, hepatitis, VGKC. All came back clean or within normal range. CK was tested and followed for 6 months ( 97, 112, 127 - all normal values and for sure not in the normal high value ). I have also done probably the future bio marker for screening in neurodegenerative disease called Neurofilaments Light Chain ( NFL ) at Mayo clinic 2 weeks ago. The value it's 4,5 pg/ml, value which puts me bellow the propose cut off for ALS which now it's 18,4 pg/ml. I have also had MRI done to the brain, cervical and lumbar area were apart from disc protrusions nothing serious was discovered.

Diagnostic
All of the neuro doctors that I have spoken tell me that I do not have ALS at this moment in time. When asked what about the future some tell me it's been a year you need not to worry live your life, on the other hand some doctors tell me come in 6 months for another EMG for peace of mind and see then! Some of them tell me yes fasciculations 35 years old for sure benign do not come in until weakness !! This is very frustrating. How can I live my life with a potential lethal disease around the corner ?

Conclusion
Looking at my medical report a neuro will probably tell me the chances of having ALS are slim. BUT we all know that there are cases were people with the same symptoms of cramping and fasciculations and clean EMGs developed later ALS.( some of them here on this forum - yes I know that those people could have had upper neuron signs but once they did the EMG I'm pretty sure they also had a clinical exam). I mean how to be sure ? I thought that by doing the NFL test it will give me peace of mind. But after discussion with Mayo Clinic staff some ALS patience show normal values on this test. Furthermore a decrease in value can be influenced by BMI over 30 which I have. I am lost and looking for answers.

 

[lgelb]

I am at a complete loss to understand how you could think you face "a potential lethal disease around the corner." The docs are offering you a 5th EMG in 6 months because you are obviously inducing them to believe you continue to need that reassurance. That is on you, not them. If you cancel the appointment for someone else who needs it more, I can assure you they will not chase you down.

BFS is a common dx and there is no reason to believe yours is any different than anyone else's. In addition, you have been worked up very thoroughly, with no signs of ALS or anything like it.

Take the win. If you can't, get help for the obsession.

 

[CrimsonCloud]

LGELB, what about the people who were diagnosed after a couple of years of clean EMGs with cramps and fasciculations ? Should I ignore that fact ? Even if the odds are slim, that doesn't mean I couldn't be one of those. How can I be sure ? Is this a exercise of trust between me and the neurologists ?
Probably I'm looking for reassurance because I keep having this symptoms. I don't understand how I'm having cramps and tightness in my triceps when I am not using in it.

 

[rmt]

You are correct that nobody can 100% assure you that at some point you won't get ALS. Or cancer. Or heart disease. Or hit by a bus.

But what the doctors and tests are telling you is that you don't have ALS at this point. Now it is up to you to decide if you want to spend the rest of your life worrying about a disease you don't have but might get someday. But the odds are very much in your favor when it comes to not getting ALS.

 

[lgelb]

Re the "two years later" theory, I think our point is that your chances of being diagnosed with ALS, cancer, heart disease, etc. in two years is exactly the same as the nearest person on your street at your age, unless you have a family history of early heart disease, smoke, or eat a potato chip diet, and the latter two are your choice.

Most of us do not sit around and meditate on the fact that our health is not guaranteed. We live our best lives so that if the worst happens, we do not regret the life that we missed out on, that was under our control.