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Swebster

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Hello! Thank you In advance for any and all replies. Leading up to this point....

Three months ago I had a baby. Two weeks after coming home I developed what my GP has concluded is unilateral pulsatile tinnitus ( I constantly hear my heartbeat in my right ear only). At this time I also started noticing I was short of breath. I was referred to ENT — my hearing test was perfect. I was referred to a cardiologist (normal echo, normal calcium score, normal stress test). The only thing cardiologist noted was that my heart rate was elevated, which was chalked up to stress and anxiety (which are both off the charts at this point). Due to all of this being normal my GP then ordered both MRI and MRA of the brain— when called in to review results of these I was told I have white matter changes (scaring) similar to what is typically seen in older people. Because of this I have been referred to a neurologist appointment that I am trying to patiently await, but I’m terrified.

One week after my GP discusses the results of my MRI I began body wide muscle twitching — which led me to this forum. Areas of my body get tense all day. Especially my neck and shoulders, but also everywhere else. The tenseness comes and goes. My throat also feels very tight and I still feel short of breath. I have recently been worrying that I have atrophy in one foot and one hand, but know that only a doctor could determine this. I perceive weakness and freak out every time I drop something or can’t grasp something the first time I try, but at this point I can do everything I have always been able to do. I just feel weaker.

Thank you again for any and alll input. I greatly appreciate it!
 

lgelb

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ALS is not associated with white matter lesions, but they certainly bear looking into. It's good that you are following up with a neurologist. Meanwhile, I would make sure that you avoid smoke and any other toxins.

Congratulations on the new baby!

Best,
Laurie
 

KarenNWendyn

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Just to reassure you, white matter lesions noted on MRI are frequently non-specific and not pathological. There are some conditions that can cause them, but ALS is not among them. However, most of the time, they are just something that is picked up on MRI but are not clinically significant.

High levels of stress can elevate your heart rate, make you feel short of breath, and lead to muscle tension and tightness. The more you stress over this, the worse it gets.

As you indicated, perceived weakness is not the same as actual weakness, and people with ALS don’t “feel” weak. We just can’t get our muscles to work.

Keep working with your doctors. Get your stress and anxiety under control. Make sure they check your thyroid function.

Please enjoy your baby and let go of ALS.
 
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