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crinzema

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I just want to thank you first, for reading my post, and answering it to the best of your ability. THANK YOU!

Ok, with that said, I'm concerned with some of my symptoms. I've had twitching throughout my body for about 1 year. I went to the doctor 11 months ago, and he recommended that if symptoms did not change for 2-3 more weeks, get a ekg or mri or one of the two. I can't remember. But because my parents yell at me when I'm concerned about my health, I don't bring up the subject much, and now 1 year later, I still have the twitch, but worse, and I have developed more symptoms.

The twitching stayed in my calf for about 8 months, but has progressed everywhere in my body, especially within the last couple days. Shoulders, Arms, Legs. But for the most part seems to be like benign fasciculation.

Earlier this week, my left arm became extremely numb, and I felt weakness in the entire arm. I did some strength tests in my fingers, just because they felt very week, and the picture below shows what one of my fingers look like when I put any pressure against it. It is sort of difficult to type with my pinky and ring figure on my left hand.



I also have had the have experienced the symptom related to Oscilliopia, which my eyes seem to jump. Like when I am looking at something, everything shifts. Takes me back, because it can be so profound.

I am a white male age 27. I have bipolar, and take depakote, but that's it. I did have surgery on a muscle mass growth in my leg a couple years ago. It was benign. But I had a second surgery because it regrew.

I would not be so concerned if it wasn't for how weak my fingers feel. Typing this is not hard, but it's not as easy as it normally is. q, w, a, s, z, x are all keys that are becoming hard to press, and typing seems difficult now. Strength seems to be there, it just seems difficult to make them go without really concentrating, but when I do, I can still press relatively firmly. I journal everyday on my computer, so I notice the change quite profoundly change this week. I've heard twitching happens after the weakness, which in my case is opposite. But IDK... Thoughts? Questions? Thanks for your response.
 
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affected

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There is a post at the top of this forum titled READ BEFORE POSTING - please go and read it.

Perceived weakness and twitching mean nothing. You don't have any ALS symptoms in your post :)
 

crinzema

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Thank you for your reply, and I accept it. Your response is valued and I just want to let you know how much it means to me. Really. I did read the post you referred to. I'm just uncertain how fast the weakness progresses typically, so out of my ignorance I wanted to know? The post made weakness sound binary, 1 then 0. That just doesn't sound reasonable. IDK
 

affected

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It's not binary - but what is so hard to explain to people is that you don't feel it. You don't start to feel weak, and weaker. You simply are weak.

My husband would look at his hands in bafflement as they simply refused to work as they felt perfectly normal.

Only a doctor can measure clinical weakness. Please see a doctor, we are just strangers on the internet who cannot see you. After a year of symptoms, you do not have a fatal disease, but you may have something treatable so get it sorted with a doctor.
 

crinzema

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It's not binary - but what is so hard to explain to people is that you don't feel it. You don't start to feel weak, and weaker. You simply are weak.

My husband would look at his hands in bafflement as they simply refused to work as they felt perfectly normal.

Only a doctor can measure clinical weakness. Please see a doctor, we are just strangers on the internet who cannot see you. After a year of symptoms, you do not have a fatal disease, but you may have something treatable so get it sorted with a doctor.
I'll do that and reply when I have a diagnosis for what ever I have. This all started when I started my business, so it all could just be anxiety. I think when people see follow up replies once everything is given an all clear by the doctor, it can calm their nerves.

I'm sorry for your loss. But you're more than a stranger, because you helped me a lot, even with your short answers. This whole year has brought me much closer to a proper understanding of how scary this disease is, even if I've just fabricated it in my own mind concerning myself. Those of us, who are just self diagnosing, while probably not the most rational, are people who clearly understand the gravity of the disease, and should advocate for a cure. Which is what I'll take out of this experience more than ever.
 

crinzema

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Ok, I have another question. I was very relieved to hear your response, but symptoms just precipitously have gotten worse. All my nerves: knee joints, elbows, even armpits when I put on deodorant, are hyper sensitive. My twitching is worse, which now are much more profound than the BFS I had before, that has been with me this past year. When I move my head, it's extraordinarily jerky, for instances my head spasms to the left if I try to look left. Same thing with my arms sometimes. I have experienced symptoms like a hypnic jerk, and have video recorded myself spas out when my computer screen changed unexpectedly. It's also auditory, where even the vents of the HVAC, when they creaked during the night, cause me to have a spasm/jerk. It was the faintest of sounds. I experienced this when my dad had a coughing spell that lasted for months, years back. But why now? With all the other symptoms. I'll list them out.

BFS in thighs and calfs
Twitching in every muscle, calf, thigh, stomack, back, shoulder, neck, bicep, forearm, fingers, toes,
Hypnic jerks to sound and light. My eyes are blinking quite briskly
Can't move head slowly without jerky movements.
Carpel tunnel, like symptoms.
And when I tested my reflexes in my legs, my legs jerked quickly and felt like they were on the edge to jerk for 30 minutes after I did this test, because they felt so sensitive.
I have lost 30 pounds this last year with minimum effort. Though my muslce % has roughly stayed the same, maybe a decrease from 37% to 35% now.
 

ShiftKicker

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I draw your attention to the following section of the READ BEFORE POSTING section:

Hyperreflexia
Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.
You can not test your own reflexes. You simply can not do it and get a proper result. Go see a doctor to get a proper examination. While you have something going on, you don't belong on an ALS forum.

Best wishes

F
 

affected

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I'll do that and reply when I have a diagnosis for what ever I have. This all started when I started my business, so it all could just be anxiety.
You agreed you would not post again until you have a diagnosis by a doctor.

We are dealing with a terminal illness and are strangers. You either work with doctors or play anxious elsewhere. You have asked, we have replied, that's how the game is played mate.

All the best. (you cannot test yourself, so go to a doctor)
 

Atsugi

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Tillie's right. Just in case you need another stranger to chime in: I don't see in your posts any reason whatsoever to be thinking about ALS. Your symptoms actually point AWAY from ALS. To what, I don't know. See your doctor.
 

crinzema

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Sorry... I understand what I promised before. I haven't been able to go to the doctor because I just became ineligible for medicaid. And for the last couple days, I have not been able to sign up for insurance for documentation reasons. I literally went to the DHHS just now and I got what I needed. All this will be sorted out within a week, and by then, I'll be able to go visit a doctor. So I'm just in limbo right now, which is the worst place to be.
 

starente15

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You may be in limbo, but you're not in limbo waiting for an ALS diagnosis. I hope you get things sorted out, but in the meantime, it would help calm your anxiety if you stayed away from here until you've had a chance to discuss your symptoms with a doctor. Best of luck.
 

crinzema

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So because my psychiatrist had multiple scheduling errors, I was able to see him because of his graces. I did tell him of the symptoms I had, and showed video of them because not everything happens all the time. His first words was myoclonus, but that is not a diagnosis of a disease, that's just a symptom, from what I know. But the second thing he said was ALS. And just today, I looked in the mirror, and my tongue does look to be quivering like worms. So I'm scared. I know he is just a psychiatrist, but this guy is super smart and I drive 50 miles out of town to see him because he's the best. So my doubt is now slowly turning into certainty.
 

affected

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I would respectfully suggest to you that you do not return to this site until you have had a full examination by a neuromuscular specialist and are posting the results of clinical exam and EMG.

I presume the super smart psychiatrist has organised a referral to one for you immediately. You don't need to reply, just go get this sorted. We obviously can't help you in any way.
 
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