ikeremix
New member
- Joined
- Aug 20, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Newtown Square
I've probably spent 50%+ of my last week surfing this forum.
Below is my situation, please bear with me as i know it's a lot to read, but wanted to lay it all out there. I appreciate you reading and would love to hear any/all thoughts. Of course I'm asking and consulting w/ my neuro but wanted to throw it out on this forum since there seems to be such a wealth of knowledge and experience. If for no other reason, this post helps me vent and put my feelings on paper whether they're valid feelings or misguided ones.
But i'm still riddled with anxiety due to having so many of the markers for ALS, specifically having real weakness (plus i have all those stories and post about clean EMGs turning into dirty ones later on which has me on edge.
Below is my situation, please bear with me as i know it's a lot to read, but wanted to lay it all out there. I appreciate you reading and would love to hear any/all thoughts. Of course I'm asking and consulting w/ my neuro but wanted to throw it out on this forum since there seems to be such a wealth of knowledge and experience. If for no other reason, this post helps me vent and put my feelings on paper whether they're valid feelings or misguided ones.
- 39 year old male w/ wife and 7yo daughter
- Pretty athletic - daily 8 mile walks with weightlifting every other day. I've weightlifted consistently in the gym since i was in college until COVID hit, when i moved to at home body weight workouts. I recently returned to the gym in late April where i began lifting heavy again since i had those weights now available to me.
- In the middle of June I noticed a dramatic decrease in strength in my left bicep compared to my right (probably around 80% decrease). It happened suddenly and abruptly. I could curl 50lb dumbbells 12x with both arms, but all of a sudden I was lucky if I could curl a 30lb dumbbell 3x. And weakness seems to be isolated to left bicep only.
- My weakness is only noticed when I'm in the gym lifting weights for my bicep. If it weren't for weight training i wouldn't have noticed the weakness as it doesn't impact any of my daily routines/functions. I know the sticky notes say ALS is a failure to do something (unbutton your shirt, go up stairs, etc..) and not a feeling, but in my mind this is a failure to do something - lift a weight that i've normally done and had no problem with
- No pain or soreness whatsoever. And no dramatic impact to the area
- Labs - all came back clean
- X-rays & MRIs on both my shoulder and neck. All were relatively clean. The doctor that generated the report on my neck MRI noted I had mild/moderate spondylosis in c4 and c5 and it was more prevalent on the left than right. However both my orth doc and neurologist said the MRIs were pretty unremarkable and didn't think it was the cause of my issue.
- Fleeting feelings of very slight restlessness in my left arm and left leg (not necessarily pins and needles, but a slight buzzing sensation if you will). This sensation is not always present but seemed to be more noticeable when laying in bed / resting.
- Atrophy in Left Bicep - Neuro commented on atrophy in left arm/bicep. But I continued to weight train my right arm hard the last 2 months while totally laying off my left arm. So i think that might play a big part in the atrophy that he saw (and my right has always been a little bigger than my left).
- Muscle twitches - I feel like i've always had some muscle twitches over my life, but have noticed an uptick in frequency over the last 2 months. And maybe that's just because I'm looking for them now since i know they're signs of ALS. I would say 60%+ of my twitches are in left arm or left leg, but they are also present in other parts of my body. I only notice the twitches when resting, never when i'm actively moving around or walking.
- EMG / NCS - Had one done last week in my left arm (bicep/forearm/hand) and in my left leg (my neurologist performed both EMGs). Neuro said both limbs looked clean with no signs of weakness. The summary report read "This is a normal study without any evidence of radiculopathy, plexopathy, neuropathy or myopathy". I specifically asked him after the EMG if he thought ALS was a possibility and he said he didn't think this was ALS. And went onto say that when i first came to see him with my symptoms he believed there was a 90% chance I wouldn't end up getting any diagnosis at all (which i thought was kind of odd).
- After EMG - With the EMG good news, my nerves calmed a bit for a couple days which coincidentally (or not) seemed to lessen the frequency of both the twitches and the buzzing sensations in my left limbs (so maybe my anxiety was the source for the increased twitching/buzzing and a mental thing). And i told myself i would stay away from Dr. Google and the Forum (although i do appreciate you guys dearly), but of course i didn't and now am back in my head again - could this EMG have been done too early as i've read a bunch of those posts here? Was 9 weeks a long enough time to wait after weakness/atrophy was noticed to get EMG? I have a lot of the markers for ALS, weakness, twitching, atrophy - so maybe neuro/EMG missed it? I'm back in that dark hole.
- Brain MRI today - so we'll see how that goes. It sounds awful, but i would almost be relived if they saw signs of MS in the brain MRI. That way i'd know for certain it wasn't ALS. Ugh!!
But i'm still riddled with anxiety due to having so many of the markers for ALS, specifically having real weakness (plus i have all those stories and post about clean EMGs turning into dirty ones later on which has me on edge.