Hello everyone.

I am having some troubling symptoms since September 2015. It all started with an eye twitch that would not stop. It then progressed to arms twitching, and finally body wide twitching. During this time, I would feel perceived weakness (I saw perceived because I'm not clinically weak, and can still do things) intensely in my right leg. I have recently started having difficulty walking (Once again, I can still squat a horse, but it feels weak) and also pain in my right hand that shoots up through my arms (I also feel weakness and a burning sensation) My grip is still very strong, so I think the weakness is perceived there as well. To sum it all up, over the course of 5 months, I had the following issues:

Breathing difficulty (On and off)
Body wide twitching (Including the face, lips, and tongue) and cramps
a weak feeling in my arms, legs and hands
And just general pain in the limbs.
numbness and tingling
Buzzing/popping sensation on bottom of feet

I can still lift weights just fine, button my shirt, type, write..etc. I have been seen by 3 neuros during this time. I have had 1 full body EMG (Normal, but should a mild case of unlar neuropathy in elbow, and also should the fasiculations), one single fiber EMG in the neck muscle (Normal) and three clinical exams (no hyper reflexes, clinical weakness, balance issues..etc) I was diagnosed with Begin Fasiculations. A regular person would be happy about this, but not me. I have to figure out what is wrong with my body. My obvious fear is ALS, but I have been told by all of those neuros that it isn't ALS. My next thoughts are either MG, or MS. I just don't know what else to make of this. It is completely consuming my life.

I know you all aren't doctors, but does this sound remotely close to MS, or something neurological? If not, does anyone recognize this to be anything they can think of? (Vitamin B12 or Magnesium deficiency)

A friend of mine developed symptoms such as yours which turned out to be Guillain-Barrre Syndrome. The significant difference between his symptoms and your description of YOUR symptoms is that Guillain-Barre, in my completely unprofessional understanding, usually begins with paralysis from the feet UPWARDS. You've described symptoms starting in the head traveling downwards. In any case, you might try researching it. Also research Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) and Fibromyalgia. Both Guillain-Barre Syndrome and M.E. seem to be Viral in nature. In other words, the conditions are preceded by an infection. I'm not a doctor and it seems as though you've consulted several. I would keep asking until someone comes up with an explanation. You are your own best advocate. I'm so sorry you are going through this. Hopefully these have been helpful suggestions. Will be thinking of you and hoping you are given an answer-the right one.

Thanks for your response. I have never heard of any of those conditions. I'll have to check into them. I just thought maybe it was neurological. I don't know why I am so fixated on ALS. I just scares the living daylights out of me.

hi tribes,

if you've seen 3 neuros i would think that if it was ALS they would have picked it up. have you had any mri's? MS is a process of elimination.

when i was getting dx'd my dr did lab work & i had mri's of my c-spine & brain (with & without contrast). i had lesions & with my PE (physical exam) i got dx'd (diagnosed).

drs use something called the McDonald Criteria when dx'ing MS. you can google it.

you are your own best advocate. don't give up looking for answers but try not to let it consume you. being in control gives you personal power. but, being fearful less so. no one, ill or healthy can look into the future. try to take 1 day or 1 wk at at time & deal with that.

keep a symptom journal with dates & what sx's you have. it's kind of a mini hx of yourself & may be helpful.

keep us posted. we're here for you.

Thank you! I haven't received any MRI's or anything. My primary doc thinks its Anxiety, and my neuro seems to agree. The last neuro that seen me, blately told me " YOU DON'T HAVE ALS, " and goes on to tell me that she worked for one of the top ALS specialist..blah, blah, blah.. My thing is, nobody is truly investigating my claims.. If its truly anxiety, great! But what if it isn't..

It definitely sounds Neurological.so don't give up.

I.'ve had MS for 52 years, all caused by anxiety, according to some Docs.
The idiots. If they can't figure it out, it's all your fault!

if they think it's anxiety prove them wrong. you could consider asking your pcp to prescribe an anti-anxiety med & try taking it for a month or so. if your "anxiety" decreases (& your sx's) well, great.

but, if nothing changes con't your search. it's too easy for drs to chalk things up to hormones or psychological "problems". that's just a message to find another dr. in the meantime keep the sx journal with dates & maybe your top 3 sx's.

Okay going to play the devil's advocate, though I've seen my fair share of ID-10-T doctors and have been on the opposite side of telling them what isn't wrong with me. Like my symptoms weren't caused by diabetes. (my blood sugar actually runs low). My occasional bronchitis wasn't caused by smoking (I wasn't smoking when I was 6 mo. old and scarred the bronchial tubes) My dislocated wrist wasn't caused by playing on a computer (it was caused by a 1200lb animal pinning it to a wall.)

All the same, I have to agree with the neurologist that even without an MRI ALS was likely easy to rule out. It almost always shows symptoms on one side of the body to begin with and only after destroying that side of the body does it progress the rest. There's also a finger flick test that is a rather easy way to all but rule it out.

And most all doctors hate being told what the patient "thinks" it is. It's almost like one of those things of well if you're so smart what do you need me for. Even auto mechanics are the same way, bringing them a car that won't start and telling them you "know" it's the coil. Well then why didn't you change it yourself. And since there's nothing that can be done for ALS, why bother going and telling a doctor it is ALS when your symptoms don't fit and even if it was, if you can diagnose it yourself then you know there's nothing that can be done for it.

My own GP (now that I've found a smart one) hates it when I go into see him and tell him that I "have" strep throat, or I "have" bronchitis, an ear infection etc... And he'll try to prove me wrong and look every which way to explain my symptoms without agreeing with me, until he finally has to give in and agree. And he's asked me many a time, if I know, why am I coming to see him... the answer is simple, I can't get amoxicillin without a prescription, why does he think I never see him when I have a cold, or the flu. Those are viruses, nothing to really be done about them but rest and fluids.

Devil's advocacy done...

All that being said, I would certainly ask either the GP or neurologist to send you for an MRI. If it in any way it possibly could or couldn't be ALS or any other neurological problem, an MRI is an easy enough way to put your own mind at ease. They aren't even that expensive if you're paying out of pocket. Around $500 for piece of mind, if they think it's anxiety why shouldn't they give you the best anxiety medication known as a picture.

ALS has a very distinctive pattern that shows on the MRI, it simply can not be mistaken for anything else. It is what it is and not's anything else at all. MS and a lot of other neurological problems ehhh.... not so much. But your fears of ALS will decidedly be confirmed or denied within an hour of laying inside a tube.

In answer to the question about your symptoms, yes... they could be symptoms of MS, but MS is one of those wonky diseases where pretty much everything is a possible symptom including migraines and epilepsy. There's not a whole lot that rules out MS outside of an MRI and an LP. But it mimics so many other disorders out there.