Could this be ALS at 21 years old?

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lynne3951

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Hi everyone. This is going to be a long post, so please bear with me. I am a 21 year old female with no underlying medical conditions and I am not taking any medications. In mid-April, I was sick with some kind of head cold or virus. I had a sore throat, a cough, chills, and I was very tired for about 2 weeks, but I did not have a fever. I was tested for strep (negative) and I took an at-home COVID test (negative).

A few days after I started to feel better, I had some strange pains that went from behind my right eye all the way down the right side of my neck. A few days later, I noticed that my distance vision in my right eye was completely blurry. I also noticed that my right pupil was noticeably more dilated than my left pupil (specifically in dim lighting). I went to my optometrist and had a full dilated eye exam done. She couldn’t find anything wrong with my eyes and ordered me glasses, which do correct the blurry vision.

I ended up going to the ER a few days later because I was very dizzy and I was having lots of random muscle twitches in my arms and legs and my vision was still blurry and my pupils were still uneven. I also developed floaters in both eyes that look like gray dots. I also had lots of muscle fasciculations all over my body. I could actually see the muscles in my arms and legs twitching all day. The floaters in my vision are not there constantly, they come and go throughout the day.

I had blood work, a head CT, and a brain MRI (with and without contrast) done and they all came back normal. I ended up going to see an ophthalmologist, ENT, and a neurologist. None of them could find a cause for my symptoms and none of them seemed too concerned, but they agreed that my symptoms were unusual. My primary care doctor suggested that it could be a post-viral syndrome because most of my symptoms began after I was sick.

I was very concerned that my eye problems could be caused by an unruptured brain aneurysm because some of my symptoms appear to be similar (blurry vision and uneven pupils) and I know that an MRI or CT would not show an unruptured aneurysm. I expressed concern to my neurologist but he did not seem concerned about a possible aneurysm.

It’s been about 3 months since these problems began, and my distance vision in my right eye is still very blurry and my pupils are still uneven. They are not uneven all of the time, but it is quite noticeable in dim lighting (my right pupil is more dilated than my left pupil).

I was referred to a neuro-ophthalmologist who I saw 3 weeks ago. We went over the timeline of my symptoms and he reviewed my MRI. He said that I had mild ptosis of my right eyelid and mild Horner’s syndrome, but he said that would not be causing my blurry vision. He also agreed that my symptoms were strange, but could not provide a diagnosis.

I have continued to have muscle twitches all over my body. They will occur in my arms, calves, feet, face, eyelid, etc. I can actually see the muscles twitching when they occur. I also noticed that right after I was sick (back in May), I felt like I was having trouble walking and felt very week in my arms and legs for a few weeks. My right calf has been very sore recently and I have been tripping as well (not frequently).

None of my doctors have brought up the possibility of ALS, but I am very concerned. I know that ALS is usually a diagnosis of exclusion and that the tests that I’ve had done would not necessarily “rule out” ALS. I already suffer from health anxiety, so this has been very stressful for me. I was researching ALS recently, and of course I found some news articles and stories of people in their 20s with ALS and that really worried me. Many of the stories talk about how the person tripped one day or their hand had a cramp and they were diagnosed with ALS. This worries me because if somebody my age be diagnosed with ALS after a seemingly insignificant symptom, I am convinced that I could have it as well. Thank you in advance!
 
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affected

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whew that's a lot
try reading this really carefully and create paragraphs so we can read your post - it is just a big lump of text.
I don't see a thing that would suggest ALS.
 

MadCybertist

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I’d say you should work on getting your health anxiety under control.
 

KimT

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Sorry you're going through all these symptoms. Did any of your doctors do a workup for autoimmune diseases (ANA, for example.)

Some of it does sound like post-viral issues. I don't see anything that would have me believe it's ALS.
 

lynne3951

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Hi! None of my doctors did a work-up for autoimmune diseases. I had the negative CT and MRI and they essentially told me not to worry, but I am. The twitching all over and calf soreness is really worrying me. All of my muscles twitch pretty much all day long and I’m worried that could indicate ALS.
 

ShiftKicker

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The twitching in ALS comes along with a whole spectrum of other symptoms you do not report (please read the link affected provided you). Just like "coughing" can indicate anything from hay fever, throat irritation, a virus, right on up to cancer- it depends on the symptoms that coughing is accompanied by.

If you are still being affected by your symptoms, you can return to your doctors- but searching ALS forums is definitely not where you need to be.

Take care.
 

lynne3951

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Thank you all for your kind responses. My apologies in regards to the formatting of my first post, I did not realize that it was just one large lump of text, but I don't think that I can go back and edit it now.

I still had significant twitching all over my body today and soreness/cramps in my right calf, foot, and wrist, which did make me very anxious. This all began a few days after I began to recover from the illness that I had back in April, so I am wondering if all of my symptoms could be post-viral, though I haven't been able to find any articles about post-viral symptoms. I did take a few at-home Covid tests the first few days that I was sick and they were negative, but maybe they were not accurate?

I have been reading online that a lot of people are having some very severe symptoms post-Covid, so maybe that is what is causing my symptoms? I feel like that timeline would make more sense rather than ALS, since my symptoms began shortly after my illness. For the first few weeks after I recovered, it felt funny to walk and I almost felt as if I couldn't walk straight. I also had lots of twitching in my arms and legs and felt like my right hand was not working, which is why I have been really worried about the possibility of ALS. I have been paying very close attention to all of my symptoms, which is making me even more scared of ALS.

I have also seen a handful of stories on website like "Her ALS Story" and I have seen some reports of people in their 20s with ALS, which has only exacerbated my anxiety. Despite these cases, is it relatively rare to have ALS in your early 20s? I am wondering if I should set up an appointment with a neurologist to have an EMG done or if that would be unnecessary.

Thank you all again for your help and reassurance.
 
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affected

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What you need to do is go see a doctor.
Stop researching online as you don't have the medical knowledge to interpret what you read.

This is not how we see ALS present, but if you google enough you will convince yourself of anything.
 

lgelb

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I have put your first post into paragraphs.

As for the content, though, I see no reason at all to think of ALS. ALS is not a catch-all for people who don't have some name for their symptoms. There are specific criteria that you haven't come close to mentioning. If an EMG will reassure you, get one, but be prepared to accept the verdict that you do not have ALS. And, as Tillie advises, stop googling, and follow up with the docs you are seeing, especially in regard to your vision. I am sure they will want you back for a followup.
 

lynne3951

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Thank you all for your help. It’s sounding like this definitely isn’t ALS. In regards to following up about my vision, I’ve seen an optometrist, been to the ER, and followed up with an ophthalmologist, neurologist, and even a neuro-ophthalmologist. After a brain CT and MRI, none of them can offer any answers for my symptoms and they have been really alarming me. I haven’t noticed any improvement in my vision or the floaters in my eyes since they began 14 weeks ago.
My health anxiety has really gotten the best of me and Dr. Google even convinced me that I had Creutzfeldt-Jakob Disease, which is apparently super rare. I am hoping that since my symptoms began after my illness, that it is all related and is nothing life-threatening, but I have been so incredibly anxious for the past 14 weeks about what could be causing my symptoms.
 

affected

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You can do yourself a favour and block this site. Take all the steps you can to reduce your anxiety.
All the best.
 
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