u/Efficient_Rip_3388

https://www.reddit.com/r/BFS/s/fk1xhXFrCb

Since this original post I have had a progression of symptoms which are concerning. I have been to another neuro that performed another emg/ncs and clinical exam and stated that there’s no way imaginable I could have a serious disease with what she has assessed especially being 30y old.

Symptoms that I have ongoing that concern me but she didn’t care to listen or link to anything serious.
I Can’t put on weight. Have been eating excessive amounts of food for 3 months and have not gained a kg. I track everything I eat in terms of calories too which is how I know. My forearms get strained really easily by doing difficult hands on tasks but nothing out of the ordinary that you’d expect excessive pain. I wake up nearly every night with numb hands on both arms. If I go for a walk my feet go numb or start burning. My fasciculations are constant like many of you have in calves but mine are in my forearms, calves thighs, triceps and back. In my case I’m starting to believe there is the chance of operator or unskilled neurologists performing tests and not listening to presenting symptoms.

Should I get a 3rd opinion from a neuromuscular specialist give the progression of my symptoms? It’s been 3.5 months since sudden outburst of full body fasciculations and 6 months since fascics started in my calves.

Hi all just wanted to share my story and insight for others and where I am at the moment with my journey. Id be interested if there is anyone who has shared similar experiences. 30 yo male. My twitching started in my calves in March this year while doing moderate incline treadmill cardio and riding a bike everyday to and from work. Initially it was in my calves for up to 2-3 months where I didn’t think much of it putting it down to heavy exercise and possibly electrolyte deficiency. One morning at the beginning of May I rode to the gym and started my workout doing 2 sets of leg extensions before my whole body started having fasciculations in every muscle you can imagine accompanied by nausea. I was taken to hospital by ambulance where they treated me for severe electrolyte imbalances. From that day onwards I have not experienced a day without muscle twitching in every body part I can imagine. Other symptoms I experience are numbness and tingling in my hands and feet and general fatigue. Gym performance is a little down but I can still lift the same weight but my volume has decreased. My creatine kinase levels are elevated at 230. I had a emg and ncs study completed 4 months post commencement of twitching in my calves and 6 weeks post other areas and they detected no abnormalities in their findings and they deemed it to be bfs. Any reassurance or advice in my situation? I’m really stressed that it still could be something worse!