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Old 02-16-2016, 01:37 PM #1
12Tribes 12Tribes is offline
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Default Please help me.. I don't know what to do..

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)

Last edited by 12Tribes; 02-16-2016 at 02:58 PM.
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SallyC (02-17-2016)
Old 02-16-2016, 08:10 PM #2
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Default Sounds like Guillain-Barre Syndrome-in reverse

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.
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Old 02-17-2016, 11:37 AM #3
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Originally Posted by MarianBlue View Post
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.
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Old 02-17-2016, 12:47 PM #4
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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.
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Old 02-17-2016, 01:09 PM #5
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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..
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Old 02-17-2016, 02:46 PM #6
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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!
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