Could this be anything but ALS

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canadianbuddy

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Hi everyone my symptoms started 5 months ago when I had a massive headache that lasted about sent my body into shock. My entire left side had a constant tingling sensation followed twitching that went up and down the left side of my body. From then on i started to develop weakness followed by fasciculations in my left side. I saw a neurologist in September who had performed an EMG and diagnosed me with benign fasciculations as nothing was found. My symptoms continued as my right leg started to also feel weak and develop fasciculations as well as my arm. I saw another neurologist in early October who specializes in ALS at a university hospital who performed an EMG on my entire left side (from foot to shoulder to neck to spine) and nothing was found and gave me the same diagnosis, the only thing noted was brisk reflexes in lower legs.

Since then my symptoms have continued to progress. I then decided to go to the US to get another emg done this time on my right side and the report is attached. I have weakness throughout my body, I twitch everywhere except my right pectoral and my breathing is now affected also my stomach is sore. I also forgot to mention overtime my left toes are not as responsive as they once were, I have to squeeze very hard to get them to contract. If I lightly bend my toes only my big toe and the one directly to the left move. My balance has become very poor, my forearms get sore after very little movement and hands shake uncontrollably when holding light objects like my phone, my teeth have begun chattering uncontrollably. I also forgot to mention if my left foot bears any pressure I develop this pulsating tingling sensation and sometimes both my feet under pressure feel as if they are vibrating. The only things I have not really experienced so far are muscle failure (clinical weakness), cramps, falls, and stiffness. I have had brain MRI and that was clean, I have had some blood work done and nothing was found.

I just don't understand, I asked the neurologist specifically to check my foot and toes that were not very responsive and nothing. Every emg I have shows no abnormalities, not a single one. Now the only places I have not had an emg on are my chest and my stomach and the right side of my back. I guess I'm just looking for hope, I fear I am one of those special cases who later have a diagnosis.
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Nikki J

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You have a lot of sensory symptoms which point away from ALS. You also have sensory deficits on exam which are not indicative of ALS. I am surprised they commented on 2-3 beats of clonus which is usually considered a normal variant Bilateral Hoffmans can also be normal. Arguing against als are your repeatedly normal emgs and lack of muscle failure which are the two big things in diagnosing ALS.

this is not to say there is nothing wrong but it does not appear to be ALS. I would suggest to keep following with one neurologist as difficult diagnoses are usually made by observing the patient over time

good luck
 
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KimT

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Did you have a brain MRI with and without contrast? Also a spinal MRI with and without contrast as well as a lumbar puncture? Just chasing down autoimmune possibilities that can account for your symptoms.
 

lgelb

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I agree that ALS is not in this picture. Kim, the OP does mention a clean brain MRI. Still, there are several autoimmune blood markers that should be assessed. You might want an internal medicine evaluation between neurology appointments.

Another possibility is a small stroke or series of clots/small bleeds, fluid buildup, etc. Hearing about the worst headache of your life followed by tingling always calls these into question, though your MRI was clean. Not all MRIs are 100%. Someone might want to order a head CT.

Best,
Laurie
 

KimT

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An MRI with and without contrast might show something that didn't show up if one was done without contrast.
 

lgelb

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True, but generally in the case the OP describes, they would have used contrast for part of the exam. Also, insurance will not generally pay to repeat the MRI soon thereafter, but will potentially reimburse a CT to follow up.
 

canadianbuddy

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So should I be reassured that an area that i'm experiencing weakness in with a clean emg points away from ALS? Also thank you guys for responding and I will let you guys know what happens
 

lgelb

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Yes.
By all means, let us know what the final diagnosis is.
 

canadianbuddy

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I know we are not supposed to self-diagnose but I do believe I have ALS, mine was just started in the upper motor neuron. Im so mad, scared and every other negative emotion you could think of. I'm just a regular person not a neurologist it shouldn't be my job to figure out what's wrong with me and discuss with a doctor my reasoning behind it. This whole experience has been terrible for me I wasn't completely honest in my first post. So far I have seen 10 neurologists 5 of which were neuromuscular specialists and 3 of them were at an ALS center. I know that this disease is hard to diagnose but this is ridiculous, these doctors study this and see patients far more than me. Sorry for the rant I'm just so mad as the only way for me to get access to medicine is through a doctor, and if they can't see it they won't prescribe it. I've progressed so quickly and I need to take anything that could help. I have an appointment this Friday with another specialist and will let you know how it goes. I'm just so defeated and I keep praying that the doctor finds anything else.
 

lgelb

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You will have to answer for yourself whether it's more important for you to follow your fear or come to terms with the truth. Counseling is available to help you do the latter.

With a number of medical encounters, including specialists in the field, and only normal EMGs, you can see that it will be impossible for anyone here to see ALS, however much you do. Even if you had "upper motor neuron dominant disease," which your history does not suggest at all, ALS would not yield normal EMGs and strength, nor the issues you've described.

The advantage of finding something else is that it's likely to be much more treatable, so that's a diagnostic process worth going through, but you can't do it with multiple neuros at the same time. You need to pick a lane, or you will never know more than you do right now.

ALS is known as a disease that as it progresses, if not at onset, it cannot be mistaken for anything else. It is not so difficult that your 10 neuros are all missing it. You acknowledge that they've seen more cases than your zero, so try to follow that logic through. They're not missing it because you don't have it.

Nor do you have the problems that we associate with it. You'll stipulate, perhaps, that, like your docs, we know more about ALS than you?

Truly, I would establish care with a good internist who can help you navigate these waters. You could have something systemic or not, but you certainly deserve to feel better than you do.

I am closing this thread because you're demonstrating the inability to take a wonderful "no" for a real answer, an answer that you have heard in several places. As I said before, stop back by if/when you have an EMG or an exam that suggests ALS as part of the differential diagnosis. Currently, and very fortunately for you, that is not the case.
 
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