Scared and confused

picmike77

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Hello,

I've been lurking on this website for a while as my my symptoms progressed. I am a 27 y/o male with no family history.

Basically about 2.5 months ago I noticed some decreased fine motor skills in my left hand that manifested as difficulty picking up and maneuvering small objects in that hand. Around the same time I noticed decreased power in my left quad when pushing off. A few weeks later it spread to my right side. It is more difficult to lift my right foot than it used to and my right quad seems weaker. I can still walk mostly normal, walk on my heels and toes (although it is more difficult on my right foot), and I'm not tripping or falling. My right hand has gotten weaker as well and it's more difficult doing things like typing, brushing my teeth, shaving etc with my right hand. It's not impossible to do these things in fairness just noticeably more difficult. I've also noticed some minor difficulty in swallowing and shortness of breath but no discernible language changes. I also have widespread fasciculations that are more common on my right side but are all over that started a few weeks after symptom onset. My right arm has seemed to slowly get slightly weaker as well over the last month or so. This mainly manifests itself as objects feeling heavier and it getting tired much more quickly.

I went to the neuro, who is a neuromuscular specialist who has dealt with als patients before, in late September and he didn't seem very concerned and couldn't detect any clinical weakness. I felt at the time like my reflexes were brisk but he felt they were normal so I would have to defer to his judgement on that. I got an emg on both arms that came back clean also in late September.

After the appointments I felt better, mentally, and assumed it was probably just in my head but the symptoms seem to continue progressing and I am concerned. I can still do everything that I would normally do it's just more difficult and seems to be getting worse.

Sometimes I worry I've gone insane given what the neuro said and the emg but it's hard to ignore the symptoms.

Please let me know your thoughts and thank you so much to anyone who takes the time to read this. I am very scared.
 

lgelb

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Given the clean EMG, I would go back to your PCP and ask to be worked up for systemic disease. For example, many people have had unrecognized Covid-19. I would also record your sleep to make sure your breathing is regular. Sleep apnea and other sleep disorders can make movement more difficult generally -- like when you try to function on very little sleep.

Best,
Laurie
 

picmike77

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Yea, I definitely have not been sleeping well this year and particularly since all this stuff started. I usually wake up at least 2-3 times in the night if not more and often have difficulty going back to sleep due to the fear.

Unfortunately, my first move was what you suggested, to go back to my pcp, and ask what else could be causing this, should we do more blood tests (I had some in July, before the weakness, that was normal), or is there another specialist I could see. He kind of checked my strength and poked and prodded a bit and then said he thought I was fine, which leaves me in an awkward position because I am notably not fine, mentally and physically.

On another note I am seeing a psychologist about the anxiety and insomnia, so hopefully that will help on the mental side, if not the physical side.

I suppose all there is to do now is either wait and see while trying to get some sleep or keep hunting for doctors. This whole situation is a shit sandwich.
 

picmike77

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I just had my 2 month followup with my neuro. It unfortunately had to be remote due to covid so not as extensive as I would have liked. He gave me a couple tests for strength (walking on toes and heels, squatting down and standing up, etc.), looked at my tongue and checked my face in a couple positions (holding air in my cheeks, closing my eyes tight, etc.). He still said at the end that he thought als or anything serious was unlikely though he seemed less sure than last time (this could very well be my personal misinterpretation). He did say I looked good to him overall and that I hadn't seemed to decline much over the last two months. He ordered some blood tests and an mri and wants to see me in person after those tests are completed. I asked for an emg but he said it was too soon after the last one. He also said he believed my fasciculations to be benign since they are not constant in affected muscles.

On the personal side, my weakness seems to be getting worse and seems to be affecting every muscle in my body now. My reflexes a month ago seemed depressed but I checked them today and they seemed normal so I don't know what that's about. I've noticed a few locations in my body that seem to be atrophying but have not had it verified by a physician. I've also had some episodes of light crying, where my eyes burn and water for no reason and my cheeks get pulled into a frown. I hope this is just the intense anxiety I've been feeling. I also experienced an episode of what I believed to be clonus in my wrist a few weeks ago, although I am not a physician so it could have just been trembling or tremoring. I'm also experiencing trouble swallowing, although no issue with food or water yet, and shortness of breath, where I just can't seem to catch my breath, which was very terrifying. The shortness of breath seems to have improved the last few days. I also looked at my tongue today and didn't notice any twitching or atrophy and I am not slurring my words.

Anxiety is definitely playing a role in this, the question is how much of a role.

In any case I'm firmly in the diagnostic process now so one way or the other, I should be coming across answers soon.
 

Clearwater AL

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Picmike77, you wrote…

“I asked for an emg but he said it was too soon after the last one.
He also said he believed my fasciculations to be benign since
they are not constant in affected muscle.” ?

(“I asked for an emg but he said it was too soon after the last one.”)

If you’re saying you have had an EMG previously maybe you
could post the summary/conclusion at the bottom of the report.

“I hope this is just the intense anxiety I've been feeling.”

The National Alliance on Mental Health suggest that most
people with health anxiety will experience one or more of the
following symptoms:

Fasciculation (twitches).
Shortness of breath or a feeling of choking,
difficulty swallowing.
Shaky limbs, weakness.
Tingling in the fingers, limbs.
Numbness, muscle aches.
Panic attacks.

Finally…

“Anxiety is definitely playing a role in this, the question is
how much of a role.”

From the symptoms you have posted you should conclude
anxiety is a much larger roll currently in play.

Consult your doctor for some help with your anxiety
 

picmike77

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I'm seeing a psychologist to help with that and have started medications. You're right that no matter what else is happening, anxiety is ruling my life right now. I have my bloodwork and MRI scheduled for the next few weeks and then another clinical exam with the neuro at the end of december. I'll try to stay away from here and dr. google as best I can until then.

My emg was clean as a whistle but it was pretty early on after symptom onset, about 6 or so weeks. The summary stated that there was no electrodiagnostic evidence of radiculopathy or motor neuron disease.

Thank you for the responses
 
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