Thanks a million for this. These started for me after Covid. Nothing helped. I went through ALL of the tests. Several times. I also get the horrid myoclonic jerks and yes it’s worse when I’m tired. I have them full body. For 3 years now.
Almost 10 years dealing with calf muscle twitching 24/7 if I stretch I get a big cramp like everyone else many exams and thousands of my dollars so so far I kind give up right now the last I did saw a physical therapist but no results
Hi, glad you’re still okay and I’ve had it for a year and a half now, I got mine from drinking way too much alcohol and too much caffeine intake. All I’ve been told is that it’s not curable but managable, it does suck, the fact you can feel it even when relaxed is stressful but I’m glad I have all my other health in tact so I’m greatful for that and that keeps me going alone for sure but it’s just annoying if anything
It took me a year to convince my GP to refer me to the Neurologist, it then took a year to see the Neurologist, he then referred me for EMG tests. I was then diagnosed with "non-benign cramp Fasciculations". I do get some muscle twitches sometimes in my leg and feet muscles. I also have osteoarthritis. My legs/feet can cramp up at anytime, with the condition. If you cross-reference with Isaacs Syndrome, Potassium controls what goes in and out of the muscles, that is has far as I've got with my research. With my condition the nerves are over firing the muscles but in the medical papers I've looked at, it says it is a rare condition and a lot more research has to be funded to find out the cause for the over firing. What I would recommend is that you read a book by Sally, K Norton, titled, "Toxic Superfoods" on oxalates. Food is certainly a starting point.
Hi Jack, it's July 9th 2024. How are you now? I have same issues as you except I don't drink caffeine and don't deal with anxiety. I have had multiple concussions that I've dealt with for 20 yrs. But, 4 months ago, the muscle problems started.
Have you ever had blood work done to check your parathyroid glands? Parathyroid glands are four tiny glands that sit behind the thyroid gland. Parathyroid glands produce PTH hormone and play a role in controlling your body's calcium and phosphorus. Recently I was diagnosed with Thyroid cancer. I had surgery to remove my thyroid. During the surgery, a couple of my parathyroid glands were removed as well. I've had to take calcium supplements to regulate my calcium levels. Since the surgery, I've noticed muscle twitching throughout my body. It pretty much happens daily and it's concerning me a little bit. However, i was told that low levels of calcium can cause tingling in your extremities. Also, i've read online that low levels of PTH can cause muscle twitching. I haven't done a ton of other research, but I often wonder if my low PTH (parathyroid hormone) is the cause for the twitching. Might I suggest you ask your primary care physician for bloodwork to check your PTH?
I’ve been twitching for over 4 years. Some days more than others. Had many tests all clean. The way I coped was to quit worrying anymore about them and let them be. A lot of it is anxiety related and stress.
@jackemma5116 - I have the same symptoms that have worsen over last 2 years, but no muscle wasting. Seen a reumathologist and a 2 neurologists, had EMG that showed the muscle fasciculations and sensorimotor axonal neuropathy. One neurologist has suggested a muscle biopsy and spine tap (which I'll have soon, have you had these? The other neurologist suggested BFS.
I have had these for 2 years.. my difference is that I have a 50% chance of carrying a gene for ALS. I am still hoping this is all in my head but I know this could be the first sign of this terrible disease.
Hey Jack. Any updates on your BFS? Going through same here with fasciculations. Tremors led to PD but neurologist says my fasciculations are not PD related. Anxiety is high as my mother passed from ALS and I am a Vet.
I went through all this before, I know the fear. But as your neurologist likely told you fasiculations are not the first symptoms of many of the motor neuron diseases that you are afraid of, muscle weakness is. I do not have any weakness but did an EMG and nerve velocity test and brain MRI anyway which all came back unremarkable. My condition is a little more complicated because I sometimes have "relapses" with parasthesia and widespread pain but I've been assured its benign. I've been like this for 23 years with still no weakness and fortunately pretty rarely have those "relapse" moments so I try not to worry about it. I'm 53 and started TRT a year ago and have been able to build a good amount of muscle mass.
I was diagnosed with BFS (Benign Fasciculation Syndrome) a week ago by an Orthopedic doctor after experiencing 24/7 muscle twitches, mainly in my calf muscles but in recent months spreading to above my knees and all the way up the inside of my thighs. I had 24/7 twitching in my calves for over two years. Despite consulting multiple doctors over the years, including a Nephrologist and Mayo Clinic, and undergoing tests like an EMG, my symptoms were often dismissed as normal. Finally, an Orthopedic doctor took my concerns seriously, mentioned BFS, and suggested potential ALS (Amyotrophic Lateral Sclerosis). However, after scheduling EMG tests, no blood labs were ordered, leaving me uncertain about the diagnosis and facing a two-month wait for the tests. I'm relieved to be on a path towards a real diagnosis after feeling overlooked by multiple medical professionals. Any insights would be appreciated. Thanks for your informative video! It's been helpful during this challenging time. Coming back 2 weeks later... It’s now 11-19-23 about 2 weeks later. I decided not to wait 2 months for an EMG and called my clinic about my case and a need for an EMG much sooner as I could not see a neurologist without first having the EMG. They suggested a partner clinic and I got my EMG within a few days. The administering doctor who did the needle probe part of it (a technician did the conductivity test where the measure your muscle response via a series of electric shocks.) and he said it looks like BFS. My Ortho doctor said no results were sent and they would look into it and get back to me. I sensed the slow boat again and called their partner clinic and they said the results were sent 2 weeks before the same day as my test. I emailed my Ortho doc back and no response other than a referral was sent finally to neurology. Now neurology is stalling with scheduler saying a neuro nurse will call before an appointment can be made but no reason other than the scheduler not understanding the referral, some strange thing. Three business days pass and no call. I just think you must be your own best advocate in the vast medical industry that I feel is sadly in a gradual decline. Back again... 12-13-23 and maybe I'm wasting everyone's time ha! I was diagnosed BFS, so very happy not ALS. I just wonder though that it's not normal yet they refer to it as nothing major, and no follow-up to anything, so I just thank God for every day as I have most of my life. I think since this is not normal maybe there is something it is a precursor to and maybe they just say it's not serious to reduce patient stress. Overall one thing I notice is I will be on a bike ride (I commute and exercise by bike and don't own a car) that lasts 2 hours or more and my legs unlike before begin to feel weak, and sometimes to the point where I have to stop and rest. I never had to do that before while on the same trips as recent as 2 years ago, so leg weakness. Also the muscles of my legs, if I press on them, are painful in a way that reminds me of when I was a child and hockey season began and I was out of shape only this is most of the time. Maybe that's just aging as I am 69 soon to be 70. The other day the fasciculations were very active and such activity increases when the same day or day before I was on a longer bike ride. Also the muscle mass of my legs do not increase despite a lot of biking, lifting my bike onto city bus racks, going up three flights of stairs to get to the back entry of my apartment building. Now I no longer enter the building from the back because of those stairs getting to be too much and also increasing shoulder pain similar to rotator cuff problems. I'm only mentioning all of this as I hope it helps someone. Thanks for this informative video!
thank you for this, mine started 3 years ago, had MRI, blood tests, emg and lots of neuro tests all came out fine. I had some meds given to me back then but was discontinued as tests came out okay. Im still have some very minor twitches but barely noticeable and rarely. Im on a medication for anxiety/panic disorder now.
Anyone found supplements that help? I'm determined, even though my bloods are fine, that this is some sort of imbalance. Gets more intense after excercise. Get weird muscle pain on and off too. Had an EMG 6 weeks in, now about 9 weeks.
I'm experiencing this. Just over 2 months twitching. Had an EMG in some muscles after 6 weeks and was fine. I twitch randomly all over body every few seconds. Sleep is so hard. They just brush you off and say deal with it if nothing major found. My neuro wasn't worried about ALS and MS has been cleared with MRI
Hello, I am writing from Azerbaijan. I am 21 years old. For two months, I have weakness in my arm and numbness in my hands and feet. This problem has spread all over my body. Do you think I have Als? İ am 21 years old
Buralarda teshis arama. Doktora git. Semptomlarin bir cok sebebi olabilir. Ciddi sebepler olabilecegi gibi basit sebepler de olabilir. Doktor muayenesi en dogrusu.
Hey jack thanks for the video, just a quick question all of my symptoms match up to yours but the most irritating fasciculations for myself are by my temples along with the ones i get everywhere else. Im curious of you have them in that area at all?
You're welcome. I haven't had them in my temples, that I recall? I have had them all over, though. I hate the one in my quads the most! Eyelids suck as well. Thanks
Your video has just calmed me right down! I’m 34 F - there isn’t a place on my body that doesn’t twitch. I’ve seen a neuro x 2 and he preformed a NCT and EMG - in my two legs and arm. Both areas that twitched. They both came back clean - also had an MRI that came back clean - of course I go down the same rabbit hole as you!
@@brittanysacco2335how are you doing now? I’ve been twitching for about 3 months all over. The past month I have been constantly twitching in both feet and right calf which does lead to cramping. Fortunately I cannot always feel the twitching but if I check I can see them popping constantly every second.
I'm sorry to hear about your symptoms. I did get a diagnosis.... the diagnosis is BFS. That's a really hard thing for people to wrap their heads around. BFS is a real thing, just like MS or Parkinsons or diabetes for that matter. If that makes sense.
8 days ago I began having this weird muscle Fasciculation around my sternum area, it's when I breath out only, when I breath in, it goes then repeats soon a I relax and take breath out. I had a ecg, blood work and chest xray which was normal. These spasms are causing me to tense and lay/sit in awkward positions every waking hour to try and help. Has any experience this and what was the outcome of investigations and did what treatment help? Thank you so much if you can help me
Lol... I'd love to tell you it all got better and went away. Unfortunately, such is not the case. That said time has really help me accept and not worry about it, like I did. I will do another video with much more detail soon. Thanks for checking in🙂
Hi Jack. I know this post is a little late, but I feel like I should ask. Have you ever had your vitamin B12 or vitamin D levels checked? I had very similar symptoms to what you are describing and found out that it was due to those deficiencies. Since treatment, my fasciculations are few and far between. If you havent yet then you should get those checked just to rule them out.
Hi all....I've been dealing with cramp fasciculation syndrome for 20 years now and I'm in the midst of a terrible flare-up. I used to be a cyclist and runner and used to put myself through the ringer. I always thought I was careful with my nutrition but while on a ride 20 years ago, the muscles in my legs went haywire and I had to go to the ER. It was a horrific episode. Of course, the ER docs topped me up w electrolytes and said I'd be fine. 20 years later and I'm in a real downward spiral. I can't exercise at all and symptoms have spread to all over my body, including my ability to swallow. The intensity of my symptoms wax and wane but they are always there lurking. My team of neuros at UCSF has tried everything(i've had every test done) and nothing works. Here's the interesting part and I'm hoping somebody can relate to this......Four weeks ago I had botox injections in my calves and hamstrings to calm down the fasciculations. About two weeks after the injections, I woke up w intense tightness, twitching and cramping at the injection sites. Usually, one hammie would be worse than the other but all of those muscles felt equally miserable. This seemed to trigger an intense anxiety effect as the muscles elsewhere in my body went haywire. Has this happened to anyone else? Also, my neuros don't think this auto-immune related but how can it not be? Thanks for listening.
Hi Jack. I just wanted to say thank you for posting this video. I have had BFS now for 12years. Multiple testing and EMG’s and biopsy as well. Last time I saw a neuro was six years ago. Recently had a huge flare-up and doing ok at avoiding the rabbit hole. I appreciate you taking the time to post your story. Thank you.
I was also diagnosed with BFS back in 2018. I was worried out of my mind that I had ALS or some other fatal neurological disorder. My twitching has improved considerably the last five years, though I do have occasional, short-lived flare-ups. I think the worry the symptoms cause are often much worse than the symptoms themselves.
I agree with what you're saying 100%! The symptoms are very manageable, that said they can be very challenging psychology. Part of the issue, in my opinion, is accepting BFS as a diagnosis. Most people think it has to be something else, MS, ALS, and so on. The fact is BFS is a real diagnosis, with real symptoms. I need to make a new video. I have talked to many people who have commented and responded to the videos. All have contributed what I consider valuable information. We all have very similar symptoms. Like I said, I will try to make a new video and pass this information along.
@chaitanya668, I don’t recall having any of those symptoms when I was diagnosed. A few years later, I was diagnosed with sciatica, which definitely causes a burning sensation in my buttock and the back of my left leg.
@@paullance1258 Exercise was the best remedy for me. From my understanding, once you engage the twitching muscle, the twitching will stop, at least temporarily. I also went on a low dose of Lexapro for the terrible medical anxiety I developed because of my symptoms. That seemed to help as well.
hey was wondering if you had some brisk reflexes because i have almost same exact symptoms as you had emg about 6 motnhs after twtiching and emg was normal. neurologist says its def not als. but im so scared.
By any chance do you still live in Colorado? I just came across your video as I was doing my own research about this. I live in Colorado.. and I too went to my pcp here in Fort Collins where I live. And he wasn’t concerned. I on the other hand am concerned. I know this video is 3 years old .. but I really appreciate all that you shared. And honestly how eloquently and open you were. I am struggling with these muscle twitches mainly in my left calf. I like you eat healthy , work out. I’m in my late 30’s. I’m just absolutely terrified of ALS. Thanks 🙏
Had it for 4 years now, still happening 24/7. Started a week after I discovered my uncle was diagnosed with ALS. He died in 2022. I have health anxiety. Did not test for anything....too fearful of the results. I have been on antidepressants since 2019.
