djwohleben
New member
- Joined
- Sep 17, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NJ
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:
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.
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 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.