Symptoms for 4 months

hey everyone, ive been reading these forums for the past 4 months as i got symptoms that really worried me, finally decided to make an account and seek some advice. mainly i want some opinions on my symptoms, i really appreciate any input as i know everyones time is valuable.

so here goes, im a 24 year old male and started twitching in my calves approx. 4 months ago, over the course of about 3 weeks the twitches spread up my body to include my face. (literally every muscle twitches, including my groin muscles, all around my eyes... everywhere. the twitches are mostly single twitches but sometimes ill get a fluttering one, and theyll go away when i flex the muscle. i feel most of them but some of them i can't feel). i had a clean upper and lower emg, clean MRI, waiting on some blood tests. all reflexes were normal (1 beat of clonus the neuro said, and wasnt worried). in the past month however all of the muscles in my body shake when i relax them. for example if i lower my arms from a raised position its like they go down in steps, no problems during flexing, just when relaxing. this happens in my back, thighs, ankles, shoulders, wrists, everywhere, even my neck when i nod my head. i was really stressed out at first but now im kind of indifferent and just want an answer. also; if i smile for a while or laugh alot, my mouth muscles seem to have a hard time maintaining a smile and will tremor (not sure if this is an accurate term for what my mouth does, it like it flexes and relaxes rhythmically) but if i rest my mouth for a minute or two, it goes away. ive also had really bad leg muscle pains that feel like my thigh/calve/gluteus muscles are being ripped apart on the inside and my feet feel like lead; again this comes and goes seemingly according to a will of its own. have a followup with the neuro in 2 weeks to show him the shaky muscles when relaxing thing. my GP was concerned about it and really noticed it in my shoulders. and said he usually sees that in patients with weakness. but in his office i did a hand stand and did 10 vertical push ups no problem.

anyways; as i said before, any insight would be greatly appreciated as im so sick of having no idea whats going on and these symptoms seems really odd (my GP mentioned Myasthenia Gravis, but it was just conjecture).

a specific question i had, was if this were als/mnd would weakness start proximally, and if so, would it present as shaking when relaxing muscles?

once again; thank you for your time all comments welcome.
My Prayers go out to everyone afflicted/affected by this disease... its the reason i decided to get my doctorate in pathobiology (and that was before all of this happened).

Sincerely, and with all due respect,

Caliburn

Have you looked in to BFS( benign fascicu lation syn drome)?
"Benign fascicu lation syndrome (BFS) is a neuro logical dis order characterized by fascicu lation (twitching) of various voluntary musc les in the body. The twitch ing can occur in any volunt ary muscle group but is most common in the eyelids, arms, legs, and feet. Even the tongue may be affected. The twitch ing may be occasional or may go on nearly continuously. Usually intentional movement of the involved mus cle causes the fascicu lations to cease immediately, but they may return once the mus cle is at rest again. wikipedia"

Try keeping a journal of your symp toms, when they start, how long they last, what you were doing and so on. It gives a time line of what is going on and makes it easier to remember when you are bombarded with questions.

ive been keeping a detailed journal; it seems like exercise/stress makes my fasciculations worse and I thought that maybe it was bfs until I started having this ratchet-like shaking of muscles all over. also; I forgot to mention the fasciculations are completely symmetrical and once they appear in a muscle they don't go away. theyre not 'continuous' (as in rhythmically constant) but once they appear somewhere they show up every few minutes. channelopathy's and M.gravis have been mentioned, but I feel like the neuro and my gp are kind of scratching theyre heads. until the ratcheting muscles appeared (its not classical 'cogwheeling' they say) they thought it was all due to anxiety. supposed to have a nerve and muscle biopsy in a few weeks.

(not sure if I repeated anything here that I stated previously, im in between classes; just trying to make a quick post).

Thanks for the input I do hold out hope that its BFS.

ALS doesn't usually present all over. Most common is foot drop or limb onset. Respiratory onset least common.
Your age is another factor in your favor as far as ALS goes.
Just hang in there and let your do c's try to figure it out. We all know how hard the waiting part is.

thats for sure. the waiting is unbearable, although im starting to get used to it and just deal.

Thanks for the reply

i guess the part that had me most concerned was the ratcheting/shaking muscle movements when relaxing muscles. still has me worried. but i agree it doesnt sound like als/mnd. its all just very odd. and this pain in my gluteus muscles is horrible.

I hope your dr can figure it out for you. Waiting is the hardest part. try to relax and not worry, stress and anxiety can make your symp toms worse.

The diag nositc process can be long, it is a process of elimination. We have all learned to be patient through it all. Keep us posted.

Muscle weakness after use is most common in MG.

They did labs they are waiting on? HOw's your B-12 and Vit. D and potassium?

Pain is not an ALS symptom--and neither are other sensory issues.

Your neuro will have to figure it out for you but it doesn't sound like ALS to me

Muscle weakness after use is most common in MG.

They did labs they are waiting on? HOw's your B-12 and Vit. D and potassium?

Pain is not an ALS symptom--and neither are other sensory issues.

Your neuro will have to figure it out for you but it doesn't sound like ALS to me

they did blood work 2 months ago; everything was fine. just had a another couple of blood samples drawn yesterday. i asked my doc to add Creatine Kinase to the list as id like to make sure that one is normal first and foremost. theyre also testing for NOS, and a regular metabolic panel (which im guessing includes B-12 etc. etc.).

Thanks for the input

Hope your having a good wednesday.

HI

NO, B-12 is not a routine blood test. And there are two required--one that tests the levels and one that can tell if it's being absorbed properly. It can cause a multitude of symptoms.

Okay, thanks, ill talk to my doc about doing b-12 as well

Go to aboutbfs.com. and ask the same question there. They have a lot more active members than we do, and with clean EMG, it really sounds like BFS.

ive talked to alot of the BFS'ers on there, and while i seem to have alot of the symptoms of BFS i have some other odd symptoms, a few which developed (or have come to my attention) since i last posted here, i was hoping you all would indulge me in listening to them (theres only a few new ones). the new symptoms ive been noticing are; when im sitting at my computer with my heel elevated and my toes on the floor (which is usually how i sit at my computer) my legs slowly start to shake up and down (like that nervous habit some people have when theyre sitting doing something boring etc.) and they shaking up and down will increase in intensity until i put my heel on the ground, at which point it completely disappears. ive i rest my legs for an hour or 2 and then lift my heel again it will start up again slowly (after my heel has been raised for approx 3 or 4 minutes) and intensify (like before) until i lower my heel.

the other symptom i noticed when i was laying on my side with my elbow bent, hand supporting my head; my shoulder started to spasm uncontrollably, like a constant tremor, it was rather violent in nature and very rapid. this doesnt seem to go away, and only happens when my shoulder is supporting my weight, this happens with both shoulders.

From what ive read about BFS and ALS these symptoms dont really seem to fit with either, unless this is some form of widespread muscle weakness, but my muscles dont seem weak when i do something strenuous.

once again, thanks for everyones input and patience, ive seen that you guys deal with alot of hysterical twitchers, and if twitching was my only symptom i wouldnt waste your time, im just hoping someone can shed some light on this as my doctors really dont want to say anything specific until they know more (which is very professional, although it really doesnt ease my mind at all). not to mention if i even mention ALS they look at me like i have 3 heads. lol.

Caliburn

also; Klonopin makes my fasciculations go away (~90% of them)