More than BFS - should I seek out ALS Specialist?

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djwohleben

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Hello, friends.

Please know that I've already reviewed the "Read Before Posting" thread and I found a lot of helpful information there.

I am a 32 year old male who has lived a very healthy existence thus far. About four months ago, in late May, I experienced sudden onset of neurological symptoms. This followed a couple other undiagnosed ailments in the preceding month including extreme fatigue/brain fog, breathlessness, trouble sleeping, and a panic attack (which I thought was a heart attack because I had never experienced before).

During the last week of may, I had sudden onset of fasciculations all over my body. There was no muscle group untouched. I went to a neurologist that same week and she ordered two MRIs and conducted an EMG (within 5 days of symptom onset), which was clean (she checked both legs and my left arm). I was put on 900 mg gabapentin and sent on my way with orders to follow up in a few months or if symptoms changed. The two MRIs were clear of any signs of MS. I believed at that time that I had nothing more than BFS.

Fast forward to August, I began to notice twitching in my fingers -- not fasciculations, but random and rapid movement back and forth. I began experiencing myoclonic jerks around the same time. I also later noticed the same twitching in my toes. I occasionally have a hand tremor, especially when lifting something such as a full glass of water or pouring something. My neurologist says that gabapentin can cause tremors, so I cut back on that to just 300 mg/day. The symptoms persist.

Subsequently, I began experiencing what I can only describe as electrical shocks running down both arms to my fingertips, stiffness/loss of dexterity in my fingers, a stabbing sensation on the pad of my right thumb (resolved within 48 hours with no treatment).

These symptoms have continued, and I now have a feeling of sizzling/bubbling in the bottoms of both my feet, and the muscle at the base of my right thumb, and in my right calf. This is not a "pins and needles"/limb falling asleep sensation. I can only describe it as a mild buzzing. There were two nights in late August in which I experienced a sensation of both hands burning (as in an oven) while in bed at night. I also had several days in which the sensation in my right leg below the knee as though the leg were quite weak/falling asleep. That has since resolved, but all other symptoms persist. My neurologist did a test for carpal tunnel and said I have a mild case in right hand, though this does not account for similar sensations in my left hand.

The fasciculations which were up until August occurring all over my body, commonly in my buttocks, pectorals, thighs, and right eye, have now settled in my right calf and my right arm, and shoulder. It has been two weeks since I felt a fasciculation in any other location.

I have thus far experienced no muscle weakness and have full range of motion. I can lift weights, stand on my tippy toes, run, all other physical tasks, though I usually feel quite fatigued after doing so. I am quite exhausted at the end of a normal day.

To summarize my current symptoms:
  • Fasciculations in calf muscles, hands, and arms.
  • "Sizzling"/"bubbling" sensation in bottom of feet, right calf muscle, and base of right thumb.
  • Loss of finger dexterity. Trouble moving them independently and/or rapidly
  • Occasional muscle stiffness in legs, especially right leg below knee.
  • Finger and toe twitching (pretty much non-stop, but worse after exertion or end of the day)
  • My right (dominant) calf muscle is noticeably smaller than my left. This is the same side where I experienced odd sensations and most fasciculations. I measured the limb and it was about 2/3" in diameter smaller than the other calf. My wife confirms that the right appears smaller than the left. This was first noticed about 1 week ago.
  • Fatigue
I'm mostly looking for advice. My next neuro appointment is in December but I'm anxious about waiting that long because I feel like my condition is worsening.
I have thought about contacting an ALS specialist in my area, but don't want to waste their time if this is unlikely to be the cause of my symptoms. I am getting desperate to get to a diagnosis and hopefully begin some sort of treatment, whatever the cause may be.

Thank you in advance for your advice.
 
That's fantastic that you've read the "Read First" sticky. However, did you take it to heart? The stick clearly states that it is a failure of the motor sensors that affect those with ALS. You've described all sensory symptoms, so that points away from ALS.

If these issues are troubling you to the point of affecting your day to day, then getting an EMG to ease your concerns may be of benefit. However, in my opinion, it's not necessary. Whatever you have going on is treatable , I'm sure, whereas ALS is not treatable or curable. Go back to your doc with your concerns and hopefully they can work with you to ascertain what is going on.

Good luck and take good care.
 
Buzzing and worrying about it can be exhausting, but is not necessarily pathological. The clean EMG and essentially normal exam with the picture you paint suggest the possibility of a systemic rather than CNS explanation. The "undiagnosed" issues in the preceding month are support for this possibility.

So I would go back to a good internist and get worked up from there. I don't see any reason to worry about ALS.

Best,
Laurie
 
I'm so sorry for what you are going through.
There is nothing that would suggest ALS, and as already suggested, not even necessarily what you mean by 'neurological'. I agree it sounds way more systemic.
I hope you get answers soon, I would return to my doctor and discuss if you can shake your fears for sure.
 
Thank you so much. My GP suggested that it may be long COVID, though I never tested positive -- I'm sure I probably did have it at some point because I'm a teacher. I was also tested by a Lyme disease specialist and everything she tested for was negative. Hypothyroidism runs in my family but my numbers are in the normal range. I'll take my concerns at this point to an undiagnosed illnesses forum. I appreciate everyone's feedback and send my best to those fighting this terrible disease.
 
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