Old 12-01-2018, 11:59 AM #1 (permalink)
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Default I am Convinced I have ALS.Please Advise.Please

Gender /Age - Male/36
Feeling Since Six Months-
feeling breathless after climbing 15 stairs quickly.
Feel like tripping in Bath Tub
Fee like going Blank

Feeling Since 9 weeks -
Twisted my head in Sleep and suffering from stiff neck / shoulder pain/shoulder blade pain. MRI DONE 11/29/2018C6/C7 forminal stenosis.
Blood Test 11/23/2018 CPK- 405

Feeling Since 4 weeks - Saw my Tricep Twitch, It fired which moved the bicep rapidly.

Feeling Since 5 Days - Twitching all over my Body. Less twitching on right Tricep where it started but twitching all over body. Thighs/ Eye Lid/ left bicep/ Calf’s/Hips/ Jerk in wrist. Woke up last couple of nights due to Twitching.

I am not sure if I am weak/ lososing Muscle/ Able to Run 3 KM with in 30 mins day before yesterday which caused stiff right calf.

I am really scared now .. Hard to get Neurologist appointment where I Live...Appointment on Jan 22.

Please Advise ur honest opinion...Thanks Again
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Old 12-01-2018, 02:32 PM #2 (permalink)
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Default Re: I am Convinced I have ALS.Please Advise.Please

I don't see ALS in this, but you have a documented spine problem. What was the plan for addressing that? I would certainly make sure your bed, mattress and pillow give you the right support in sleep.

Twitching doesn't mean anything and there is no evidence of weakness, which I am sure whoever ordered the MRI tested for.

The rest of your symptoms should be discussed with your primary doc, including any events or illnesses that presented about six months ago. S/he will tell you that twitching doesn't mean anything and could easily relate to your pain and stiffness. Were I you, I would ask about PT and also consider therapeutic massage.

Best,
Laurie
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Old 12-01-2018, 09:07 PM #3 (permalink)
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Default Re: I am Convinced I have ALS.Please Advise.Please

Thanks Laurie...That’s a Relief....My general physician did not bother to do a Strength Test...I am so freaked out that I am traveling to India to get an EMG and To see a neurologist since I am driving crazy with anxiety and cannot wait till Jan 22 for neurologist appointment and to get break from work and be with family for 15 days.Any thing I should be worried going on 20 hr flight. Thanks Again
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Old 12-01-2018, 10:57 PM #4 (permalink)
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Default Re: I am Convinced I have ALS.Please Advise.Please

I would try to get a PT or physiatry eval before you go, but for a 20 hr flight my concerns would be (1) exacerbating the pressure in your spine by sitting all that time -- so I would certainly try to get a seat/plane where you can get up frequently, and (2) blood clots, as with any long flight, so another reason to keep moving.

If you were going to go anyway to see family, I certainly understand, but don't let anxiety about your health be the reason you go -- you guys won't have a good time if everything is about you instead of the people you would be going to see.

I can't believe your soonest available neuro appointment, with all the Midwest cities you have access to, is late January, so I would try to surface more options to allay your fears, and then go home when you are less stressed. I would also keep going with a PCP since there could be something other than neuro issues at play (note: ALS is purely a neuro issue so I'm not implying that at all, but am talking about your spine).

And despite the lack of formal strength testing (which you can certainly get at another PCP; doesn't require a neurologist), your ability to still run is obviously reassuring.

Best,
Laurie

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Old 12-02-2018, 03:41 AM #5 (permalink)
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Default Re: I am Convinced I have ALS.Please Advise.Please

I was able to get in to see a neurologist at Rush Medical Center in Chicago in less than 2 weeks. You are reasonably close to Chicago so if you can’t get in there reasonably fast you can try Northwestern or University of Chicago. All of these have highly regarded neurology departments.
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Old 12-02-2018, 09:09 AM #6 (permalink)
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Default Re: I am Convinced I have ALS.Please Advise.Please

Thanks Guys...Sorry I have booked a non refundable ticket...but apart from that my left shoulder has been twitching all day and night and I suddenly feel my left shoulder weak... is it possible and dose this point to probable ALS
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Old 12-02-2018, 11:45 AM #7 (permalink)
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Default Re: I am Convinced I have ALS.Please Advise.Please

Your symptoms are all consistent with your mri. Be aware that you likely will have emg changes in that area from your spinal issue. You should take your mri disc and report with you and get a comprehensive emg report to bring back with you

You need follow up for the spine- was that not arranged?
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