Technically Diagnosed, but still uncertain...

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glipyrtitis

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Sep 8, 2021
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Learn about ALS
Diagnosis
08/2021
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Hey,

So technically today i got a soft diagnoses of ALS. Which ill explain what i mean by soft diagnoses right away. I got 2 EMGs, after the second i got called in by my doctor. To paraphrase him, he essentially said he does no feel comfortable giving me a definitive diagnosis. He then proceeded to say that both EMG results lead him to be concerned about the possibility of ALS and he will be referring me to an ALS specialty clinic.

Why am i here? Because I am confused. Up until today, ALS was never on my radar, i was under the impression that it is rare and only in people older than me (I am 30). And after doing research all day, especially using the resources here I am even more confused. Especially with the resources here that essentially state ALS without weakness is not ALS. I DO NOT have weakness as described.

To summarize the story, about 6 months ago i started having my leg give out randomly when walking. By give out i mean it basically just stopped working for a brief period entirely. I went to the doctor, they ruled out blood clots, then sent me to an orthopedic specialist. The orthopedic specialist noticed my leg give out on the way back to the room, but did not notice any weakness at all in the exam he also gave me an MRI of my spine and found nothing wrong. He diagnosed me with "transient weakness" and referred me to a rheumatologist and a neurologist.

The rheumatologist did a metric butt load of blood tests and found nothing. By this time my leg was starting to get stiff, and my calf always feels flexed. There is no real pain other than a cramping/stiffness discomfort.

The neurologist did an EEG, MRI of my brain, spinal tap, and blood tests as well and those found nothing. He also said he found NO weakness. By this time I started having strange sensations in my leg, it was as if there was a phone under my skin in my muscles vibrating on and off all day usually at rest. That turned into a crawling/vibrating feeling when i walked. My leg is also now INCREDIBLY stuff and causing a lot of discomfort, I lost a lot of flexibility compared to my right. He then did an EMG. About a week after the test they called back and asked if i could do it again, so i did. Weirdly a completely different neurologist gave me it. About 2 weeks later (today) i got called in and he asked if a couple of his colleagues could verify my strength. They both came in and did the testing again looking for weakness, neither of them found any weakness. Then the news was broke to me.

I'm just so confused. I have no twitching, no reflex issues, no weakness, no speech issues, they didn't even say or note anything about muscle atrophy. Nothing. Just a hard to explain sensation, with a lot of stiffness/lack of flexibility, and cramps/discomfort in one leg. Im only 30, and according to everything on this forum i should not have it.

I guess im looking for hope, is there any possiblity that ill go to the ALS clinic and they will tell me i do not have ALS? Or is it i likley have it and had a highly efficient and fast diagnostic process that led to a super early diagnoses before i got to the weakness stage?
 

lgelb

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Yes, the clinic changing the diagnosis is a distinct possibility.

We do not want to give either false hope or unnecessary pessimism when someone is in the diagnostic process, but the onset you describe would not be typical for ALS. I don't know the credentials of the neurologist(s) involved in this provisional diagnosis. It is not uncommon that doctors for whom motor neuron disease is not a specialty get wound up about an EMG that is not definitive, not recognizing the wide spectrum of reasons for motor impairment.

30 is young for ALS, but young adults account for 1-2% of cases.

You are doing the right thing by going to a specialty clinic, and we always recommend a second opinion anyway. Meanwhile, I would ask for both EMG reports, as you should always have a copy of your own records, and if you like, post them here with your name and birthdate blacked out.

Best,
Laurie
 
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