LONG THREAD - HIGHLY LIKELY ALS in 26 YR OLD?

Kyle44

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Hi Everybody! This post will be quite long as I've had a lot of medical attention to rule out many possible issues, and I want to be as thorough as possible.

My name is Kyle, and I am 26 years old. I've currently been having a slew of medical issues arise that I believe there is about a 90% chance is because of ALS. I am a healthy individual, weighing 160 pounds with a height of 5'10". I eat relatively healthy and have a healthy BMI. Throughout the years, I've worked out regularly and maintain a good body physique.

I've had leg weakness for about 2 years, with fasciculations constantly. No pain in my legs, however on a rare occasion I do get tingling in my feet. My legs feel quite tired after walking for about 30 minutes, and I will generally lay in bed and bring my legs close to my body as it feels better for my muscles. If I workout my legs, I can hardly walk for a couple of days, because of these issues, I haven't worked out my legs in about 6 months. I've also had issues breathing the past couple of years. I don't have asthma and have ruled out any lung or heart issue that could be affecting my breathing. My oxygen levels float around 94-96% oxygen saturation, and I live about 5,000 feet above sea levels, otherwise my oxygen levels would probably be slightly higher.

Due to my ongoing issues, I've seen multiple doctors and had multiple ER visits. Here are some tests below that I've completed, along with the results. Also take a look at the attached files to see the actual records.

EMG of lower extremities - Bilateral L5 chronic radiculopathy R>L as shown by: Chronic denervating changes in the Right Tibialis anterior muscle and bilateral Peroneus longus muscles. My comment about this: The neurologist only did an EMG on my lower legs, he did not test any other muscles! The neurologist stated that I have a pinched nerve in my L5 nerve, causing muscle weakness to both legs. Thus he requested an MRI of my Lumbar spine to confirm that result, which came back completely normal! When looking at the EMG results, do not read the neurologist's comments, he states that I have chronic lower back pain, which I do not have, nor have ever had. See below -

MRI of brain - Mucus retention cyst on floor of left maxillary sinus; otherwise, no findings. Negative MRI.
MRI of lumbar spine - Unremarkable, no findings, negative MRI
MRI of cervical spine - Mild to moderate degenerative changes without stenosis or canal narrowing.

Vast blood work completed - Ruled out any thyroid disorder or issue, ruled out any vitamin deficiency besides Vitamin D where my levels were 11 when they should have been within a range of 30-100. Ruled out diabetes with a Blood A1C test. Ruled out any infection based on protein levels.

Additional testing completed:

EKG - pericarditis suggested, spoke with ER lead physician who states I have benign early repolarization and nothing to worry about.
Chest CT scan - perfect
Heart Echocardiogram - perfect
Heart holter monitor - perfect
Heart stress test - perfect
Lupus ANA test - negative
HIV test - negative
Syphilis test - negative
MS - ruled out based on no lesions found within brain or spine
Physical Therapy appointments which confirmed severe leg weakness in the muscles listed on the EMG.

CK levels - 148 U/L - which I found is near the average levels of someone with ALS (160, compared to a normal person around 70).

Additional info: I do randomly get lightheaded here or there with movement. I have not been diagnosed with anything for it. I also have begun to get the same feeling in my right arm that I have in my legs, where it's weakness, but not the same type of weakness you feel when you just did a workout or ran for 2 miles. I've also recently noticed that the left part of my lip is drooping when I am speaking. I don't notice any slur. I'm in the process of determining if I have OSA (Obstructive sleep apnea), and am working with a sleep professional. I don't believe that I snore whatsoever, and as mentioned previously, I'm in moderately good shape. OSA wouldn't fit the picture for someone of my age and health; unless I had something else causing it like ALS. I've been waking up with a dry mouth and not sleeping very well. I was also waking up short of breath in the earlier parts of this year, 2022. I do have GERD so originally thought the shortness of breath was due to this, but after further investigation, it seems quite unlikely. My shortness of breath feeling I get randomly, it does not correlate with working out. The feeling is that I cannot take a deep breath fully, only shallow breaths. I have ruled out any psychology disorder.

Here is a link to a video I recorded when I noticed that the left part of my lip is drooping when I speak:

I'm not really sure what to do next. Based on all of the information above, my CK levels, my progressive muscle changes, (unconfirmed by EMG), negative MRI scans, and all other tests being negative, I am pretty certain that I do have ALS. Nothing else really makes sense. Yes I do have a vitamin D deficiency, but I don't think that could be causing all of these issues. The only things that I could potentially see it being would be maybe Lupus. My mother does have Lupus, but does not have any of the same symptoms; however Lupus does affect everybody differently. While my Lupus antibody ANA came back negative, so does my mother's when she is not in a flare. I think it's a far stretch, but I'm not ruling out anything until I'm certain. I certainly don't have chronic radiculopathy or a pinched nerve causing widespread muscle weakness as confirmed by the MRIs. My thoughts are that I should request my neurologist to do a full body EMG, get a second opinion, and see a rheumatologist just to rule out any potential immune system diseases. I've received no answers up to this point and the neurologist can't even give me a reason why he believes it's a pinched nerve based on the EMG, but the MRI has contradictory results.

Any suggestions or feedback would be great! I currently have no anxiety or mental health issue when assessing my medical condition, I'm just trying to figure it out and I'm sick of going back and forth to doctors without any real answer. Thanks everybody for reading!! :)
 

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affected

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Truly this does not sound even remotely like ALS, but I can imagine that you are grasping for anything since you don't believe your doctors diagnosis. If you don't think your doctor is right, you could start again with a new PCP and not state what you think you have but get a fresh perspective.

If the EMG of your legs, where you feel you have symptoms showed nothing, then a full body EMG is a waste of time.

I hope you get some answers, but only doctors with medical training who can examine you and order the appropriate tests will get to the bottom of this. I can't imagine how it must be to have been chasing this for 2 years and I hope you get some answers soon.
We are not doctors here, but we know ALS very well, so while we don't know what is wrong, please don't pursue this one.
 

lgelb

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One or more of OSA, lupus, and/or low Vitamin D [that I trust is being addressed] could indeed account for many if not all of your issues (which of course can reflect multiple causes). Another question is what underlies your low Vit D. As to your "90%" certainty as regards ALS, I'm at least 99% sure you don't have ALS. You seem to be doing a lot of quantification and drawing clinical conclusions off a flawed evidence base. Seeing multiple docs can compound the difficulty of coordinating your care and identifying any clinical diagnoses, so I would try to find an internist you can work with and stick with them, and they can refer you to specialists if/as needed.

Best,
Laurie
 

Kyle44

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The EMG showed distinct muscle weakness in two muscles in my legs, including denervation which is atrophy of the muscles. I'm having constant fasciculations in my legs, and I also have shortness of breath which I believe is due to diaphragm weakness. Also I want to clarify that I have not been diagnosed with lupus, and the antibody test came back negative. I was offering it as a potential cause, albeit a far stretch. I really felt like all my symptom line up quite well with ALS and I'm surprised you are both so sure that it's not ALS.

I've read that OSA is typically associated with bulbar symptoms and my CK levels are right aligned. I'm confused what specifically is tipping you off that it's something completely unrelated. Thanks for replying! :)
 

Bestfriends14

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I will third the opinions given to you thus far. I see absolutely nothing that points to ALS. You name a whole bunch of sensory symptoms and perceived weakness, yet zero function failure. That 100% points away from ALS. I'll also add to look elsewhere for a solution as pursuing ALS is looking down the wrong path.

I do hope you find answers to what you're looking for. Thankfully, this is one on the list that you can cross off.

Take good care and good luck.
 

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I truly think you need to stop trying to become a medical researcher online as you are mixing up all kinds of medical terms and interpretations of what tests do and what the results mean.

I do hope you get some answers soon, but whatever is going on, ALS really is not on the table.
Please understand our members are actually dealing with ALS, we have this great post here with loads of detailed information, but we really can't sit down and go through everything point by point with each person that posts here.


3 senior members have said, this does not sound the least like ALS. That's all we can do I'm afraid.
 

wishmobbing

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I have ruled out any psychology disorder.
I really felt like all my symptom line up quite well with ALS and I'm surprised you are both so sure that it's not ALS.
You've had a ton of diseases (including ALS?) ruled out by clinical exams, blood tests, scans and needles in your legs. Those exams were performed by medical professionals. Yet you write that you yourself have ruled out ANY psychological disorder. Did you see a professional to come to this conclusion? You seem to be very thorough in getting to the bottom of your symptoms, so your psyche should not be ignored. I could imagine that the last two years were exhausting and thinking about a fatal disease could easily lead to anxiety. But then, anxiety itself could be the reason you've chosen highly unlikely ALS, a fatal disease with very little ambiguity, out of all the possible reasons for your symptoms.

I'm surprised you're putting a 90% high capital letters likelihood on ALS and surprised you seem surprised that we're not jumping on your bandwagon.
Have you asked any of the many doctor you've seen about ALS? What did they have to say about it? Was it ruled out? Was it named as a possible cause?

Laurie wrote something very important: multiple causes. Right now you're searching for one easy answer that will explain everything. But if you get the explanation you're hunting here, none of those problems will be solved. Could be your legs are totally unrelated to any other symptom. Stay open for different and less fatal causes.
 
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