Looking for opinions on my symptoms

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I have been having interesting symptoms to say the least. I thought it was worthwhile to share a bit of my story, symptoms, and background on here. To see some opinions on it. I'm going to mention that I'm a recently turned 23 year old male. The first set of symptoms showed up in Summer of 2021. Started off with what I thought was restless leg syndrome in my left leg, but progressed from there, and turned into fasciculations that spread to the rest of my body. Bellow I have mostly all my symptoms written out.



Symptoms:

Bodywide muscle fasciculations, with no specific hotspot areas. Can accrue in every voluntary muscle group. Including the throat, fingers, face, and even my tongue. Fasciculations occur randomly, with sometimes periods of rest. Specifically I may go up to 4 hours without a fasciculation. I have never, however, had a day that I do not get them. There is no “hotspot” area for the fasciculations specifically. I have seen that stretching can induce fasciculations. Exercise does not reduce, nor induce fasciculations. Further description of fasciculations: Generally fasciculations will last for 1-2 minutes in muscle groups, then dissipate. Can also be a single fasciculation lasting less than 1-2 seconds, then dissipate. A “flare-up” can occur causing continuous fasciculations lasting 1-2 hours.

Balance issues. Borderline failure of Romberg test. Unsteady on feet in some situations. Possibly signs of vertigo. Notice that I'm unable to stand completely still. I've also unable to stand on one foot for longer then 5-10 seconds without loosing balance.

A buzzing feeling in random muscles. Majority of the time occurs in legs, specifically calves, thighs, and feet. However can accrue in any voluntary muscle group. The feeling is similar to a phone's vibration.

Tension headaches. Possibly unrelated, however worthy of noting. Occurs in the back of head. I'm having a pressured feeling in the skull, occurring in back, and top of head. Followed by eye pain. Occurs on and off.

Possible signs of weakness.. When holding objects weighing in mass 5 LBS (2.2 KG) or more, tremor can occur in arms, objects will shift around in hand, and will be unable to grasp objects completely. Noticed I have a harder time grasping smaller objects for long periods. Specifically I noticed smaller objects have a high chance of following out of my hands. Some objects are feeling more heavy to me than they were before, my laptop, for example, feels like holding an object weighing more than 6 LBS (2.7 KG). Holding household pets has become more of a task, my dog weighing 17 LBS (7.7 KG), now feels difficult to hold.

I mentioned this a bit above, but I'm going to again mention it. Tremors. They occur when I exert strength into a object I'm holding, or placing my arms in awkward condition.

I also have issues with coughing, feeling though something is stuck in my throat, and sore. I have GERD, and bad allergies. So it could just be that.


Other symptoms: Pins and needle sensation in face. Cramping in my hands, and legs. Vision issues like floaters.


I cannot specifically confirm if I have muscle atrophy, as I’m unable to find ALS atrophy examples online that well. However I do have at least 3 dents in my right thigh that have appeared in the last 1-2 years. I also have noticed my forehead having "cracks" or places that seem like there is very little muscle in my forehead.


(I have had multiple test done, I'm going to list them bellow)

Two Brain MRI's. One without contrast, then three months later one with contrast. All normal.

Also had a few CT scans in the last year, on stuff like abdominal, sinus, head, and chest. I suffer from IBS, and sinus issues so they were more for that, and kinda unrelated to this. But if it's worth mentioning they were all normal.

Two EMG test. First one was only upper body, left arm, right arm, neck, shoulders. Results were normal with an almost barley detectable possible carpel tunnel syndrome in right hand. 2nd one was done on my back, and on my right leg, and right arm. Interestingly enough the carpel tunnel syndrome was not detectable in the 2nd EMG. Doctor never did it on my left leg, because she thought what I had was more then enough.

My neurologist also performed the basic neurological test on me. He only noticed during testing that I had a bit overactive reflexes

Loads, and loads of blood work. I was seen by a rheumatologist due to having a positive ANA of 1:320. The rheumatologist retested it, and the ANA went to a near normal level once retested. I was also borderline positive for Lyme Disease, with 4 IgG bands positive, and 1 IgM band positive. Sadly the FDA rule requires at least 5 IgG bands positive, and at least 2 IgM to be positive. So my doctor ruled it negative. Going back to rheumatology. The rheumatologist tested for multiple conditions, which all came back negative for everything autoimmune related. Other note worthy things I noticed in my blood work, were Vitamin D is severely deficient, were talking the result was 14. My RBC, HGB, and HCT are all kinda high. Creatine Kinase was on the lower end, with a result of 54. There were multiple other blood test done, but they were normal too.


Questions:


The question that I have to ask, is, does the symptoms at all sound like ALS?
Is the two EMG test enough to rule this out?
Where do I go from here? I'm just so lost to be honest, with these symptoms I've been having for close to a year. It's been basically torture for me.
Any helpful info you can share with me?
 

affected

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I'm glad to tell you that there is nothing at all that would suggest ALS, but I can see how worried you are about what is happening.

Where from here? I think only your doctors can answer that one as they are following a process with you. I hope they find some answers for you soon.
 

lgelb

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I think P/CALS would rate actually having ALS, and losing movement, greater "torture" than what you are experiencing, though I understand your frustration. Seemingly the neurologist has confirmed neither clinical weakness nor atrophy, and your two EMGs did not raise concern. Therefore, there seems no reason to continue to think of ALS at all.

I would continue to discuss any further testing or investigations based on your lab results with your internist.These discussions might also include possible Vitamin D supplementation, lifestyle modification or a search for why it's low, screening for sleep apnea based on the high crit, etc. As to your "sadness" in not having Lyme, having had it, I would classify you as better off without it, and caution you against chasing it -- an expensive and potentially disabling proposition.

Best,
Laurie
 
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