Symptoms have Progressed

bcc004004

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Following up on a previously closed thread. I did not think I would be returning to post again, and yet here I am. 32 y.o. male experiencing a deteriorating existence.

I got off of adderrall in May of 2020 and since then have felt something is off with me. Finally, four months ago twitching began in my left calf and spread to everywhere in my body. Two weeks after twitching started I got a full body EMG which was negative.

Twitching continued and I did my best to ignore it since I had the EMG done. Unfortunately, a growing weakness has taken over my body. It has become harder to stand, walk, etc. My muscles feel stiff and weak suddenly. If I sit in one spot too long, it hurts like hell to get moving again. This is not normal for me at all.

Finally, last week, I was standing on my tip toes and noticed a new concave dent on my left calf, right where the twitching began. This was definitely not there before. Even others can notice it when I point it out. I can only assume that a particular muscle in that region has been completely denervated and as atrophied over the last three months. Calf raises are harder on my left foot. The rest of my body feels so extremely weak.

I am at this point leaning toward ALS again. I know I'm not an expert, but I don't know what else it could be. I had all the tests done. I've checked thyroid, autoimmune panels, brain MRI, full spinal MRI, ct of chest, ultrasound of stomach, carotid ultrasound, echocardiogram...I am experiencing constant body which twitching all day everyday, growing and persistent weakness, and what appears to be atrophy on my left calf.

My vision is somehow also changing. I see floaters, clear little blobs moving around.

I just don't know anymore. I am dreading the process of finding a new neuro and starting this whole process over. I guess another EMG is the next logical step.

Depression is setting in and a feeling of extreme hopelessness. Somehow deep down I know that it is ALS. I want to be wrong, but everything points to it.

If anyone has any words...please help me.
 

Nikki J

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Previous thread Need Advice / Insight

you are right you are not an expert. Even assuming you have clinical weakness and atrophy which could only be confirmed by a doctor there are many diseases to consider and to jump to ALS is your anxious mind taking over.
vision changes are not part of ALS so if that is part of the problem it is something else so no everything does not point to ALS. Your complaint of pain when moving also doesn’t sound like it. Go to the doctor report your symptoms and ask what is wrong do not ask if this is ALS. trying to direct investigations will only hinder your search for answers
 

Bestfriends14

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You are in control if you are depressed or not. You are in control if you feel hopeless or not. You are not a neuromuscular specialist and, as such, are not an expert on motor neuron diseases.

Nothing you've said points to ALS, as Nikki has said. It is really up to you if you want to believe this and continue to work with your doc, or to feel self pity for a disease you do not have. Members here would give anything not to have ALS. However, they do, but they certainly do not feel sorry for themselves. The PALS I know are out seizing every moment of life they can enjoy.

Perhaps you should do the same given that you do not have a terminal illness. You should he so very grateful for this.

Good luck to you and take good care
 

Clearwater AL

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bcc... give this some consideration.

Many people with Health Anxiety are often unable to function or
enjoy life due to their fears and preoccupations. They become
preoccupied with bodily functions, breathing, heartbeat, minor
physical abnormalities, dents, fasciculation, physical sensations,
pain, perceived weakness, sleep disorders and continuing new
symptoms.

Then to amplify, escalate, add more to it… Dr. Google.

You're too young at 32 to tie your life up pursuing a disease
probably Dr. Google led you to. Work with your doctors and
find that path to a happy and productive 32 more years and
more.
 

lgelb

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If you see floaters, do visit an ophthalmologist.

If the dent were atrophy from ALS, there would be motor neuron damage/death seen on the EMG. It is likely that your exercise patterns have changed in some way, or that there is no reason at all for this "dent." None of us is symmetrical.

A new EMG is not the logical next step, but going back to your PCP and working through this together is.
 
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bcc004004

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I appreciate the messages from everyone. I made an appointment with an eye doctor and another neurologist. I am tired of the anxiety of worrying if I have it, or chasing that diagnosis. The dent on my calf which appeared right after twitching began is hard for me to look at. I’ll have a day where I stop thinking about what it could be, and then I accidentally see my calve and all the anxiety comes back. Here is a picture of it in case anyone is curious. Would be curious if anyone who has experience with this disease ever had dents form like the one in the attached picture. The twitching drives me insane. 5 months straight of it. Clearwater AL thanks for your calming words. I’m doing my best to reread what you said everytime I get worried. If you are able to look at the attached picture and still not think I might have ALS, then I think that would give me a breath of fresh air. Regardless, thanks everyone. If anything changes or I figure out what’s wrong with me I’ll follow up. First pic is my calf with the dent, second one is my right leg which has no dents yet. The dent is new.
 

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affected

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We ask that you don't post pictures of dents, did you read the READ BEFORE POSTING thread?
Please go back to your doctor whenever you get worried.
Dents are not ALS.
Come back to report the final diagnosis by all means as it helps others with anxiety.
Twitching means NOTHING.
 

Bestfriends14

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Dents and twitching mean nothing. Don't you realise if someone has ALS, they cannot flex their calf muscle like you are doing. Enough now, ok? It's best to move on from this fear.
 
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