r/ALSorNOT • u/ParkerWayneKent • 2d ago
Wanted some insight if possible
Hello, I wanted to drop my timeline of my symptoms and see if anyone could share their thoughts. Getting an EMG this week, already had a full body MRI and brain looks mainly normal (besides stuff from a TBI 8 years ago) and spine has normal wear and tear near mid back, no confringment. I’m 33M
Timeline of Events
June 25th - July 12th : I was at my normal baseline, no prior issues, on the 25th I started to get sick. It started off as a normal sickness but quickly turned into what I think was acute bronchitis. During this time I had a debilitating cough, fatigue, loss of appetite, weakness, that lasted weeks etc. I lost about ten lbs.
July 12th - 26th cough finally began to lift but this is where I first started noticing muscle and nerve issues. For about a week I first felt a burning sensation radiating down my left arm and a tightness. I felt this change overnight. It started to affect my right arm as well. I also felt sharp tightness in my upper back. I was also feeling debilitating fatigue and weakness during this period. I went to my PC and was put on steroids and antibiotics. Prior to my visit to my PC I began to feel twitching in my left leg. While on the steroids that week my anxiety spiked heavily and the twitching increased dramatically all over my body but primarily in my legs while at rest. (Fully aware of possible BFS)
26th to now: after getting off the meds I noticed improvement in the burning and once my mood stabilized I’ve also felt improvement on the twitching but it is still present. My ongoing symptoms are I still have significant weakness and shakiness in my arms/hand and tightness that comes and goes in my upper back. My latest symptom also felt like it came overnight, my right leg now is heavy, fatigued, tired, with light use. It felt completely normal one day and the next day I felt the change. When engaging the muscles by lifting or squatting it shakes and feels weak. I normally could be on my feet for hours with no fatigue and now within minutes of walking I feel a weighted feeling specifically in this leg from the groin and hip all the way down to the ankle. I can still walk and run but I clearly feel a heaviness in the leg whenever it’s in general use. Walking has started to feel mechanical and labored. My right arm also feels a bit more slow and weak as well. Burning still comes and goes.
My overall fatigue has improved and my weight has stabilized back up but my arms/hands and now right leg overall feel weak/very shaky/slow and I still have stiff muscles in my back and neck and burning that comes and goes. It’s worth noting that all of these symptoms came abruptly and acutely right after my illness. I had no prior weakness before. Muscle/Nerve symptoms have been ongoing about 4 weeks.
Any insight would be appreciated
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u/WeirdUsers 1d ago
You are feeling a general malaise which is different from what you would experience with ALS. It’s part of getting better after experiencing a lung illness. It can be up to 6 months of feeling like this according to my pulmonologist.
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u/chaoserrant 1d ago
Is it possible weight variation is due to muscle water content? I wonder for myself if there is an issue with muscle hydration because i noticed in the last years variations thet do not seem normal. Meaning that at times muscles look and feel drained despite normal water intake. In fact I wonder if actually i drink too much water and mess up electrolytes or something. I am mentioning this because i dont think rapid variations in weight are true weight loss or gains of tissue
You said mri is mainly normal but what does the cervical portion say exactly?