Confused by Mention of ALS

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rrs

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I want to start off by stating - I have read all of the rules and want to respect others living with or caring for those with ALS.

For the last few years (first record of these sensations was 2018 according to my medical records), I’ve had an odd sensation of numbness and tingling in my right arm, and foot. I’ve brought it up multiple times to my doctor in routine physicals - but always received a response such as a pinched nerve, lifting too heavy of weights, drink more water.

I recently brought it up again at an appointment, and mention that these sensations feel stronger and last longer.

After a lot of poking and prodding, my doctor is referring me to a neurologist for an EMG. He mentioned MS or ALS.

During that conversation I essentially blacked out since I had only ever heard pinched nerve or possibly MS.

I want to also point out - my only symptoms are numbness, tingling, a heavy feeling in my limbs every now and then, and the occasional foot or leg cramp in the middle of the night. It’s not debilitating - it’s more so just annoying and a tiny bit painful.

I have no weakness (that I can notice), have no issues of grip, tripping or walking. I’m legitimately in the best shape of my life.

I’ve been working with a personal trainer and have put on muscle since last summer, and I recently ran my first half-marathon.

What could the reasoning be for my doctor even mentioning ALS - it’s really causing me to spiral. I have read the ‘ALS SYMPTOMS’ forum over and over again to reassure myself.
 

Nikki J

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Frankly, gps are not always very knowledgeable about ALS. Go to the neuro but don’t worry
 

rrs

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Thank you for replying. My neuro appointment is on Tuesday, so I’m hoping it will relieve me of the necessary anxiety from the gp.
 

lgelb

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Totally agree, no reason to think of ALS. When all is said and done, I'd reconsider this doc.
 
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rrs

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Yes, I have to remind myself of this about 4-5 times a day, but with my EMG on Tuesday - I’m just hoping that resolves a lot of the anxiety.

I do plan to find a new doctor, unfortunately, it’s not as easy in my area. I have a small town doctor and it’s incredibly hard to get a new doctor in rural areas.

Am I right to believe that the mention of ALS with these symptoms was unnecessary?

I try not to go down the rabbit hole, but everything I read tells me numbness and tingling really have nothing to do with the disease.
 

lgelb

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Yes, you are right. IMHO, no one should mention ALS unless the patient asks about it, or unless an EMG, other testing, and the exams support it.
 
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rrs

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Thanks for the reassurance. I’ll update my thread when I get results so if anyone runs into the same concerns!
 

rrs

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Hi everyone,

First off I want to thank the moderators and community members for replying to my post. I am here to give an update as I have found the updates very reassuring.

As the moderators thought, my EMG & neuro testing was perfectly normal. There is no indication of ALS, nor should my doctor have even mentioned it.

The neurologist said everything is normal. More than normal - he says I’m in great shape and have absolutely no need to worry about ALS.

He does believe my symptoms are more aligned with MS, but isn’t entirely convinced as it’s not his area of expertise. He’s ordering my doctor to order an MRI to see what’s going on there. I'm also going to start looking for a new doctor in the closet city.

He told me to never think of it again, quit surfing Dr. Google, and live my life. And that I will do.

I plan to make a donation to our local ALS chapter in thanks of the support I received during this time.
 

lgelb

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Great to hear! The odds are against even MS. There are many "normal variants" in the world, and you may be one of them. Foot cramps often respond to better hydration/more electrolytes. All the best.
 
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