Symptoms have Progressed

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bcc004004

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Learn about ALS
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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.
 
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
 
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
 
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.
 
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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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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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.
 
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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Appreciate everyone’s replies. Just doing an update, I scheduled an appointment with my PCP which is Friday. And an appointment with a neurologist in January. Something is definitely wrong with me. To all of your frustration, I am still convinced I will be one of the cases where I will eventually report back that I was diagnosed. Twitching remains body wide since April now. Abdomen, hands, calfs (where it started). I am increasingly stiff and my strength feels like it has been cut in half.

My joints pop all the time. And where the twitches started in my left calf, there is a growing dent. I understand my first emg was done in April and was clear, but it was right when the twitching started. It’s extremely difficult to do a plain ole calf raise on my left leg. Being an athlete I know this is very abnormal. Considering I could do this easily a year ago. I’m lost, scared daily. But still trying to live my best life and work hard for my family.

I understand you guys hear countless stories and deal with people overreacting. Being sick with something for almost two years has sadly driven me here. I apologize that you guys have to put up with me.

I have done every test under the sun and couldn’t find anything else wrong.

Can als present as bilateral carpal tunnel? That was the only thing that showed on my nerve study.

I’ll try not to post again until I get more answers. Just know I’m trying to get help. Thank you.
 
2 years is a long time to be waiting for answers, so I'm sure you are beyond frustrated.
Carpal tunnel and ALS are nothing alike, so there is no link.

Remember by the time a PALS starts twitching, around 70% of the motor neuron function is lost, so the EMG was not done too early.

I hope you get answers soon. We don't see ALS but obviously something is going on. Live life to the fullest in the meantime, you never get a single day back once it is past.
 
Thank you Affected. Yes I’m a little mentally worn down. This sounds crazy, but when you said there is definitely something going on it makes me worry. How sad is that? I know what you meant. It’s just that’s where my mind is at. I’m literally hoping everyone tells me I’m nuts and don’t have als. I want it to be the case that I’m totally overthinking and being irrational. Anyway, I’ve taken enough time today. Hope you guys are having a good day. I’ll touch base when I talk to my doctors.
 
Please go see your doctor about your mental health in all this. Would you rather I'd said, pull your socks up nothing is wrong? Then you would have accused me of saying it is all in your head.
Something is going on, that doesn't mean it is terminal, or even going to disable you.
Enough I think, this place is for ALS which is serious, disabling and terminal. All the very best.
 
Bcc, I've been known to be blunt at times, here goes...

You've started two Threads, first going back to May 26th. In that one
your symptoms were all over the map. Almost all could be attributed to
Health Anxiety. In the first one we even had to bare through this one...

"Stopped pooping, and when I do it is tiny pellets.."

Now that one was a first.... of all the "Could this be ALS'ers" posted

Then above... "Two neurologists have told me it is nothing to worry about."

This January you've got an appointment for a third go around.

There is no reason to post here again, unless you report you have a
diagnosis for something.... after January 2022.

We just can't hold your hand until then.

Suggestion.... copy and print out both of your Threads and your replies
and let your PCP and Neurologists read them over (they are fast readers)
so you don't forget anything.
 
I don't think you're going to be one of those people. Did you get your floaters checked?

If it means anything, we've had a run of stiffness/dents lately. New dents in themselves are not a disease. Only you know what exercise/diet changes may have occurred.

I can assure you that you have NOT "had all the tests done." Your internist has more up their sleeve, and there are specialists if necessary. Pretend ALS didn't exist. What would you do right now? I'd bet you'd go back to your internist and discuss more possibilities.
 
Okay all,

Just an update. I went to an opthalmologist at the University of Arkansas Medical Sciences Hospital in Little Rock yesterday. I expressed to him my eye symptoms which include floaters that appeared back in early 2021, about the time I noticed twitching in my calves, a small dent in my left calf, and perceived weakness in my left calf. He checked the pressure in my eyes. It was a 17 in the left eye and a 20 in the right eye. I guess these are in the upper range of normal. I am not sure what the units on those numbers were so forgive me.

I expressed to him that my vision seems dimmer and that it "feels" harder to see in the dark. I expressed my worry that I may have ALS or some other unknown neurological condition impacting me. He said that ALS is unrelated to what I am experiencing in my eyes.

The floaters are due to small "degenerative changes" in the vitreous of the eye. His inspection of the eye itself was good. No optic nerve inflammation or any other abnormal observations. My overall vision is 20/15.

I have an appointment with my PCP on 12/10. I will be sharing my reports of consistent body-wide twitching, dent in left calf, self-perceived thinning of the fat pads in my feet, which was noticed after now experiencing foot pain after walking for extended periods of time. It is definitely much more difficult to do a calf raise with my left leg. And it definitely didn't always use to be this way at all.

When I first started getting MRI's and the emg earlier this year, I lived in PA. I moved down to Little Rock so I will have a fresh set of doctors, eyes, and experts to work with.

I have noticed thinning of muscles in my wrists, slightly. Perhaps that is due to the bilateral carpal tunnel found earlier this year.

1. Can early ALS present as bilateral carpal tunnel? Or be mistaken for one another?

2. Can ALS cause thinning of the fat pads in the feet? So that there isn't much cushion left? I know MND impacts muscles not fat, but wasn't sure if there was some indirect mechanism by which it reduces the pads.

3. Any suggestions on what to ask my new PCP? Or share with her?

4. I continue to think that my heavy adderral abuse did something to my nervous system. Perhaps not ALS, but something similar? I have researched online but found very little connecting amphetamine abuse to ALS. Some, but little.

Love you guys. I did my best to wait to post until having new information from the docs. Thank you for taking the time to read. Would be nice to hear from anyone.
 
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