Old 04-10-2015, 10:24 AM #1 (permalink)
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Default Help! Bilateral onset, bulbar onset?

Thank you all for this site. It has been so helpful and full of information. Iíve been reading through it the past few months, but now I feel the need to post. I thank everybody for their help and wish you hope and peace will everything you are going through. I have also read the "sticky" notes and I have some additional questions.

I have had signs of progressive weakness over the past 4 months. At onset, I had a tingling feeling throughout my legs, heavy arms and tingling in my head. I went to the ER. I had an elevated CK level, around 690. Followed up with my neuro, my brain MRI showed no lesions, but that I had cervical stenosis involving 3 vertebrae, although mild. I also have a mild stenosis in my lumbar back involving one disc.

Over the past months Iíve had:

- Fasciculations Ė legs, glutes, triceps, chin. Visible by a doctor.
- Progressive weakness in arms and legs Ė tire very easily, groceries hard to lift, wrists and ankles feel tired and weak. Feel weaker than 4 months ago, that much I know.
- Cramps in calves, thighs, forearms
- Dysphonia (DXed by my ENT)
- Rise in blood pressure Ė now on BP meds.
- Atrophy in right thumb pad
- Increase in intercoastal, back, neck and shoulder soreness.
- Sometimes pain in knees after a long day at work or after a good bit of walking.


I had an EMG in February. My neuro only did my left side Ė 4 or 5 points including between my toes, right above the knee, between my fingers, bicep. Results were normal. Didnít necessarily say ďcleanĒ, but that he didnít see ALS either. I also had an EMG of both arms in September í14 and was diagnosed with ulnar nerve compression in both arms.

I had a spinal surgery consult. Surgery was not needed and the stenosis would not be causing my symptoms. They would have presented in a different fashion, if so.

Iíve had an entire workup for autoimmune diseases, MG and the like. All come back negative. I had a lyme test, came back negative although maybe there is a more detailed test I need?

As of now, the weakness feels fairly bilateral in both legs and arms, although the right arm feels a little weaker. The cramps in my calves are bilateral.

Would any ALS activity have shown up as far back as September or even in the February EMG if activity wasnít in the muscles that were involved in the test? My neuro said it was normal, but also did not have an idea of what was causing all of this either.

What throws me is the dysphonia. That could be a bulbar ALS symptom, could it not? Could ALS present with dysphonia and in the limbs at the same time? The dysphonia followed 2 months after my initial MRI. From what Iíve read, ALS doesnít necessarily present this quickly and not in bulbar and limb at the same time?

Another neuro has just diagnoseded me with Fibromyalgia, although I am a little dubious. I feel like my muscle fatigue and weakness has been progressive and Fibro doesnít look to be progressive. I feel more weakness and fatigue than pain. Fibro looks to be more pain oriented too. My Rheumatologist isnít entire convinced on the diagnosis, but Iím willing to try anything to feel stronger again.

I am trying to get an appointment with our local MDA/ALS clinic to get another opinion and workup as soon as I can. I do take some solace in that my EMG came back "normal." Hoping it isnít ALS, but want to know what could be causing all of this.

So my two basic questions are :

Would ALS activity have shown on either of my EMGs, even if the muscles tested might not have been affected or affected yet?

Has anyone seen bilateral onset, or bulbar and limb onset at the same time? Has anybody had dysphonia as one of their initial symptoms?

Thanks for your time and information, everybody!
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Old 04-10-2015, 11:34 AM #2 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

Thanks for being so thorough.
You don't have ALS. You have a lot going on with you, but one of them isn't ALS.
You detailed a lot of symptoms that are unrelated to ALS, and many of them point AWAY from ALS.
The EMG's were thorough. ALS would have shown up in the EMG long before symptoms showed up.

You mentioned progressive weakness over months, making it hard to lift grocery bags. ALS doesn't work like that. In ALS, motor neurons in the brain are destroyed, so that the corresponding muscles CANNOT contract anymore; they are limp and useless and paralyzed--not weak. Each nerve is destroyed quickly--not over a period of months--in serial order, one by one.

There is no feeling associated with this paralysis, before or after. No tingling, no tiredness, no fatigue, no soreness, or pain. The muscle simply doesn't work anymore.
Atrophy in your thumb pad: In ALS, atrophy of a muscle comes AFTER the muscle has been paralyzed and unused for weeks.

I think you're chasing ALS, trying to explain your symptoms. It would be best to chase something else that isn't fatal.

I'm not a doctor, so I can't tell you what you've got, but I do know ALS pretty well, and you didn't describe it.
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Old 04-10-2015, 01:07 PM #3 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

Hi Atsugi -

Thank you so much for your reply. It really helped me. I understand a lot more on how this terrible disease works. I wholeheartedly agree with you - I don't want to be spending time on chasing something so devastating. I should let it go. So many tests, so many doctors, and yet I'm still feeling weak. I'll figure it out.
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Old 04-10-2015, 02:03 PM #4 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

Sorry to hear you are having any issues at all Thomas. But, please listen to Atsugi. You aren't describing ALS symptoms. You clearly have something going on but we can't tell you what that is because we aren't doctors. Hope you find out soon what is going on. Best of luck to you, Kim
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Old 04-10-2015, 02:26 PM #5 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

I'm wondering though, if say, picking up a gallon of milk can feel like 10 pounds, wouldn't I feel some pain if other muscles had to take up the slack because of the nerves dying?

Or would it be that I wouldn't be able to pick it up at all.
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Old 04-10-2015, 02:31 PM #6 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

Thanks, Skipper! I know I'll get to the bottom of it. Hopefully soon!
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Old 04-10-2015, 02:51 PM #7 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

If you had ALS, your EMG would have seen it.
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Old 04-10-2015, 04:17 PM #8 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

Thomas,
You don't have ALS. Your EMG would of picked up on it. Please listen to us and don't continue to ask us any more questions. We have answered you. You are very luck because you don't have ALS. Enjoy your weekend now and log off this site for good. You don't need to be here. Hooray you are cleared for ALS!
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Old 04-11-2015, 12:07 PM #9 (permalink)
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Default Re: Help! Bilateral onset, bulbar onset?

Thanks, Kim. Thanks, Atsugi.
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