A Matter Of Interpretation

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Lightning Boy

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Dec 24, 2021
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Learn about ALS
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US
I have had recuring fascics ever since a Long Covid experience from a 1997 virus. Some doctors also factor in the CNS effects of being hit by lightning when I was 12. My Pfizer #1 jab brought back traveling muscle pain for 6 weeks, with burning and fascics. In mid-July I got a repeat after potentially being exposed to Covid. The burning has mostly dissipated. Pain and tightness found my forearms (5 months ago) and as I successfully stretched them, everything moved to my triceps and occasionally the biceps. My triceps still feel fatigued when I type. However, the symptoms primarily moved to my left shoulder (4 months ago) and include pain near the scapula, in my trapezoid and in the pectoral muscle at times.

In mid-September a medical specialist suggested an EMG because of the fascics, but we agreed to give it time. By mid-October, I experienced shoulder girdle muscle soreness when lifting things, that I could lift again and again. Strength was fine, but something was different. In December, when the left shoulder issues moved to the right shoulder, I thought about a grad school classmate with FAS ALS. Recalling what a gradual onset that incredibly rare subtype has, I thought ALS and Parkinson’s and BFS were worth asking my PCP about at my upcoming physical. Being 59 is a more common age for many issues than 35 was, and one of my doctors was already looking for an EMG.

I saw my PCP December 8, almost 5 months into this, and exhibited normal reflexes throughout my body and normal upper body strength. An X-ray revealed soft tissue growth in the left shoulder joint. No imaging was done on the right side. I had an EMG December 17 for “upper limb symptoms.” I got the report and forwarded it to my PCP, who offers no insights – and says he doesn’t know where to go next. I didn’t ask him why using an 8-pound leaf blower for 30 minutes left my right bicep sore. I don’t know why right shoulder pain started a week after 24 hours’ worth of “light current” sensations in my right spinatus. I am not the doctor, and I cannot read an EMG.

My finger dexterity improved since the days with forearm tightness. Though there is sometimes pain in fingers and in the wrists, my dynamometer numbers are in the 120-pound range. Everything I think I know about ALS says it isn’t consistent with my symptoms. I feel off, but honestly there is nothing I cannot do 5 months into this. Strength is good where symptoms started, and even in my shoulders. I tried deep tissue massage unsuccessfully for a month, but do get benefit from a percussion massager at times. Back to my PCP and why I am here, I really shouldn’t have to be debriefing and guiding myself. I have no experience to draw from. I would appreciate any insights about this. The insight and the compassion here are off the charts. Thanks!
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I'm not sure why you are here - you should be discussing this with your doctor, not strangers on the internet really.
There is a conclusion that gives a diagnosis, and if your PCP isn't sure what to do next, change doctors.
It certainly is not a matter for you to try and solve, and what is happening with you isn't even remotely connected to ALS.
We only deal with ALS here as the members are either terminally ill or caring for the terminally ill.
I hope you find a doctor you trust and can work through the neuropathies and back to full health, especially with long covid involved in it all.
 
From your description and the EMG, you have some very common arm/wrist problems, that PT or home exercise can often improve. The pain and tightness may be radiating from/to your shoulders also, so you might start with therapeutic massage and improve your ergonomics at work, sleep, and leisure (keep a neutral spine, do arm circles, all that boring stuff). If your PCP is not inclined to work with you, as Tillie said, find another.

Fortunately, you don't need to be here, but you can feel much better with some effort on your part.

Best,
Laurie
 
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Thank You both Tillie and Laurie. I should probably look for a new network not just PCP. I won’t back that up with examples or frustrations that only add to the length of this, but communication difficulties and the need to fend for myself are not new and not something that bodes well for us as we age and face greater needs. It is also something I never expected moving to a metro area with millions of people in it. I don’t belong here as you state, but thank you for letting me visit -- and for reinforcing my learning here -- which felt at odds with a doctor that thought I needed to look at ALS right away, and another that didn’t know what to say or do with the information I shared.

Best Regards,
Lightning Boy
 
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