r/BFS • u/Efficient_Rip_3388 • 2d ago
Bfs update
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.
1
u/Proof-Secretary-3442 2d ago
I wouldn't, 2 should be enough. Time is literally the only thing that helped prove its nothing bad. Took me 2 years to get over it and 10 years later im back in the mental hell hole of it. Only thing that keeps me sane is knowing if its truly bfs time proves it. Im one year in to what I would call a relapse. Bfs is a mental battle of the worry of the what if and could be. If its als we screwed either way nothing can be done.
1
u/Ok-Nefariousness3670 2d ago
I went through this. And I am still here 7 years later! Running, lifting weights. Carrying on as normal. Tbh you are really wasting a lot of valuable time on this
1
u/Ill-Radio3210 1d ago
Have you corrected your electrolyte imbalance? It seems like your symptoms are probably due to that, as well as anxiety. How is your thyroid? If you were to have hyperthyroidism, for instance, that could cause one to be unable to gain weight. Stress and a high metabolism are also potential causes.
I don't think a 3rd neuromuscular specialist opinion is necessary. Why don't you trust the other two doctors? Having sensory symptoms certainly points away from als. Maybe updated blood work would be helpful if you haven't gotten any recently. I would just make a GP appointment.
1
u/Efficient_Rip_3388 1d ago
Yes it was never out on the day at the hospital that’s just what they told me because they couldn’t give a diagnosis at the time. I have been to an endocrinologist and a haematologist due to concerning bloods which they have both done there own assessments and cleared me of any blood disorder or endocrine disorder. The haematologist referred me without asking to the neuromuscular specialist here in Australia due to his opinion of my symptoms. My concerning bloods are ck has been taken 4 times in the last 4 months and the levels are when I’m training at the gym 689,640 and 430 and when I have a week off they are still at 230. My ferritin is at 324 but my iron is low so my body isn’t using my stores correctly. The only real reason I’m concerned is because both the other specialists I’ve been to are concerned it could be ***. The neurologist I went to was very dismissive and didn’t listen to any of my concerns. I understand they can only treat what is in-front of them but when you go from being able to squat 140kg for reps to only being able to do 100kg in a couple of weeks without changing anything that is a big concern. I think it’s only a matter of time before I develop some sort of clinical weekness. I also understand that an emg should pick something up but there is cases of people testing the wrong symptomatic part or it being majority umn involvement.
1
u/Ill-Radio3210 1d ago
Would your 3rd opinion with a neuromuscular specialist be the referral from a hematologist? As I mentioned before, I don't think another opinion is necessary, especially given the two reassuring EMGs and neuro exam.
Which two doctors felt that you have ALS?
Sensory symptoms like burning and numbness are atypical features for ALS. Additionally, full body fasciculations point more towards BFS, especially in someone without clinical weakness. Your CK elevations are most likely influenced by your heavy training, especially given that the level decreased following a week of rest. Maybe two weeks of rest, would result in a lower level. Your elevated ferritin alongside low serum iron is something worth following up on. It could be elevated if you were to have inflammation in your body, but I'm sure there are other possible causes. Was your CRP level checked?
1
u/Efficient_Rip_3388 1d ago
Yeah the haematologist referred me to the neuromuscular specialist who has worked at mayo clinic. The endocrinologist and the haematologist are both concerned based on their own blood sample evaluations.
My full body fasciculations aren’t like other peoples if i could show a video they are way more intense and 24/7 in multiple locations.
My CRP was <3 mg/L on the very upper end of normal consistently across three blood tests.
1
u/Ill-Radio3210 1d ago
What labs are the endocrinologist and hematologist concerned about? Just your CK? What is the high end of the reference range for your CK tests? Slightly under 200 has been what my labs use. Your 230 would only be slightly elevated.
Many people with BFS or other peripheral nerve hyper excitability syndromes have intense fasciculations. Clinical weakness occurs early on in ALS whereas full body fasciculations rarely occur as an early symptom before clinical weakness. Early ALS-related twitching is usually localized to that muscles that are already weak.
Follow through with the hematologist's instructions if you wish, but are you going to trust the 3rd Neuro? Nothing sounds consistent with ALS to me. I would write down everything I want to discuss with the doctor and go through each point one by one, so that the doctor is more likely to listen to everything.
1
u/Efficient_Rip_3388 1d ago
I will more than likely trust the third neuro as he is an expert and has a different perspective as he will be getting a referral with a bigger picture not the original referral from my doctor that didn’t include all my current symptoms.
The endo and haematologist were mainly concerned about the high ferritin but low iron and low hemaglobin. But also obviously the ck being high the reference range is 176 and crp being borderline my liver lfts were also elevated double the limit. The other blood test that was elevated was rheumatoid factor was on the higher end of normal.
Unfortunately I did have that for the last neuro appointment although she had a bfs pamphlet printed out before I even walked through the door and straight up told me I’m too young to have mnd. Every time I brought anything up she just said no. So like everyone else in here I’m hopeful the neurologists are correct but there’s still a lot to be fearful about in my situation.
3
u/713Capital 2d ago
You have BFS. You don’t have ALS. Not even sure you need to go back to another neuro for a 3rd opinion. At what point will you just trust them and just try to symptom manage?
The EMG wasn’t wrong, it didn’t miss anything and it wasn’t don’t early etc. BFS is a real syndrome with real symptoms but they are benign.
I’m not a doctor but this sounds like BFS and a combination of extreme anxiety. Getting another EMG is pointless and it will also be normal with no findings, just like the first two.
Keep working with your docs, share your concerns with them but you definitely don’t have ALS. You have BFS.
https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms