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bman1979

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I began having widespread twitching about 4 months ago. I had all the test including emg, mri, blood work, and heavy metals. All came back OK. I did a lot of research and assumed that I had BFS. However since then I have experienced pain in my biceps and have noticed that my joints seem to clip and pop more than normal. I have widespread pain in my back and shoulders. My throat also twitches along with my face. This causes my ears to pop. Also my muscles shake badly when I exercise. THe shaking is all over from my neck to my calves. I do not feel weak, only the shaking bothers me. Also my fingers shake badly and sometimes feel like jello. My grip is still strong, but to me my fingers look different. They are not stiff at all, just very shaky.What would hand atrophy feel like? Also the twitching feels different. It seems to be a slow pulse, with an occasional thumper that can affect any part of my body, but especially my chest,arms,legs,and back.

The strange thing is that my twin brother started to experience the exact onset of symptoms that i did A few weeks ago. His is advancing quicker than mine did, yet he does not seem worried. I am aware of the statistics about familial als only being 10% of the total for als patients. There is no family history on either side of any neurological disorders. What are the odds of sporadic als hitting identical twins at the same time? I have been in a constant state of worry for me and my brother for 4 months now. I see a neuro in Aug . I , but have already decided in my head that I have ALS. I am not being trite about this. I am just looking for a glimmer of hope.
 

awieleba

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I was online and just wanted to respond to you. I dont really have any great input, just wanted to tell that i understand. my muscles shake on excertion also, and i twitch. It is interesting that your twin has the same thing going on?! let me know how things go!
 

Icanmanz

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Wow, bman! This is a first! Am out of words! Good luck to you, and your twin brother. May God bless you guys. Keep us posted.

Irma
 

Al

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Hi bman. The odds of you and your brother starting symptoms at the same time are as good as you hitting the Super ball lottery and him being hit by lightning the same night. I do know of twins that both developed ALS but they are a couple of years apart in diagnosis.
AL.
 

bman1979

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was it famial ?

Al, in the case that you referenced, was it famial ? I am positive that there is no history in our family on either side for as far back as 4 generations. How does sporadic ALS work?
 

Al

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I believe it was familial. Sporadic is just a chance or coincidence. My Neuro feels it is toxic exposure and genetic predisposition. They haven't figured which gene or toxin yet.
AL.
 

CindyM

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Hi Bman- Do you and your twin live near each other or work in the same place? And is it definately ALS? I ask because I read somewhere that toxins can cause ALS-like symptoms but the resulting condition might be treatable. Maybe you guys should get tested for heavy metals.
 

bman1979

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yes we live together

we live together and have both worked in the same industry for years. NO we have not been diagnosed with any thing. My brother is convinced the odds are against us both having ALS at the same time, but the muscle twitches really have me worried. I can not believe that this has come into our lives. It seems sureal that ALS is even a possibility. I long for the days when I was oblivious to the idea of ALS. Its amazing how fast things can change in life.
 

wright

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You and your twin definitely have something. However, as Al said, the chances of you and your twin developing ALS at the exact same time, is statistically off of the charts. That in and of itself should give you solace, because your symptoms almost have to be due to something else. On top of that, your symptoms don't sound very "ALS-like" to me; they sound more like a virus or a post-viral autoimmune problem, which if you both live and work in the same place, is much more probable. Sometimes these types of things take time to go away and sometimes don't have any definitive name.

Keep your docs informed of any changes that occur and try to relax in the meantime. Of course, we are here if you need us.
 

awieleba

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I just wanted to say there is somthing that my sister has that worries me as much my symptoms. I have not been diagnosed yet. I have the twitching/ jumping/ weakness/slight atrophy/ shaking muscle on excertion. Well, my sister for the past few months has had BAD cramps, I mean when ever she moves a postion. She gets up from the table and her toes cramp and spread apart! She gets off the couch and a bad cramp in her calf or thigh! If she stretches her arms-cramp in her back or neck! She said it has gotten worse in the last few months. I am not saying she has als, but this concerns me. She said some twitching here and there. She is 100 pounds over wieght, so that could be the culprit.(I am under wieght), she has no waekness. I am not sure what my point is other than 2 siblings can have different or same symptoms to an illness. I think I have an als, but I dont think she does.

But, do HER cramping sound like a concern?

thanks---april
 

bman1979

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still having problems....

My Brother and myself are still having issues. I was hoping the neurologist I waited almost 2 months to see would be able to shed some light on what might be going on. Unfortunately, the exam was far from extensive and lasted about five minutes. It mainly consisted of simple strength and reflex tests. No clinical weakness but hyper reflexes. He noted that the physiologist who did my emg also noticed hyperflexia. He then mentioned that a clean emg from this doctor meant something because he was well respected locally for doing these test. He said that there was something wrong, but that he doubted it was ALS because I was too young and because I had too many CNS signs. This statement didn't make any sense to me because CNS are an UMN sign. He ordered more mri's and I left the office shaking my head. I have already several MRI,s and feel this would just be a waste of money. In the mean time I continue to experience a myriad of symptoms that have progressively gotten worse. The twitching is still all over and happens when I am relaxed and upon muscle exertion. My muscles get fatigued very easily although I do not have "clinical weakness". I noticed that almost every night my hands will fall asleep if there is pressure on my arms. It feels like the nerves in my arms are irritated. I can feel a twinge in my left arm when I do push ups. My legs, especially my left leg has started to feel week. I'm also starting to notice some shortness of breathe along with difficulty breathing through my nose. I could go on, but I think that it is clear enough that something is wrong. My brothers symptoms have remained stable with it pretty much consisting of twitching in his arm and his being easily fatigued, although I doubt that he reveals everything that happens. I am beyond afraid and can only pray that this doesn't turn out to my greatest fear. I just can't find any thing else that it could be. I know that I probably need to go to a specialist clinic, but keep hoping that the tide will turn. I just don't know anymore.
 

awieleba

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Hi bman,

He may be doing more mri's to see if there are any changes that would indicate MS instead of als since you have cns isssues. I would go to a specialist, though. My first neuro did that 5 minute exam. at the als clinic, her exam was like 25 minutes!

take care and everyone here understands your fear.

april
 
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