Year of symptoms

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asdfjkl14

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Learn about ALS
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I've waited a long time to post here, and I will try to be descriptive and brief. :). Thank you all for taking the time to read through the last year of symptoms and any feedback would be appreciated.

03/2022 - Both calves felt weak/tight/heavy and could not be stretched out. Also neck pain, feeling like I am going to fall over when I bend down, and tremors along spine at night

04/2022 - Started twitching in left calf (eventually spread to almost any muscle you can name in my body over the next couple of months)

Throughout this time my legs continue to feel weaker and while not failing any tasks, definitely cannot perform at the level I was used to.

08/2022 XRay of spine ("There is a sign of spondylolysis at L5 and grade 1-2 anterior spondylolisthesis of L5 on S1) and MRI of brain and C-Spine were normal

12/2022 Start feeling sensations on tongue (area of tip of pin but remain for days at at time)

01/2023 Tongue starts to feel heavy and notice weird muscle dimple in right calf

02/2023 Left side of tongue feels numb for like 2 weeks and then numbness goes away but still "feels" off

03/2023 Finally see neurologist and have EMG. Neurological exam is normal except she does acknowledge atrophy in right calf (Atrophy has also been acknowledged by PCP). EMG is normal. (left arm, right leg, 3 places on spine, and left side of tongue) Diagnosis is "BFS and lumbar pathology as patient does have evidence of mild spina bifida and L5-S1 spondylolisthesis on x-ray".

That brings me to today. Twitching is constant and all over. Trying calf exercises to see if I can reverse the atrophy, but it is still progressing in the right calf. Outside of both calves still constantly is tight and semi-painful. The left side of my tongue is not normal, but my pronunciation is still normal. I feel like I am really close to moving on, but I just don't know how to interpret the atrophy and tongue symptoms combined with the twitching. Any thoughts?
 
That two things show up around the same time doesn't mean they're related. If the tongue was an ALS sign, damage would have shown up on EMG. Tongue numbness can relate to everything from food allergies to dry mouth. Constant, all-over twitching argues strongly against ALS, as does the clean EMG.

The report/conclusion makes sense to me. I would consider allergy screening and ask about PT to address your spine and come up with a good home exercise regimen. And find/keep checking in with a good PCP.

Best,
Laurie
 
Thank you for the reply Laurie! Will have follow up with neurologist this summer and PCP yearly appointment at the end of the summer.
 
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