Anxious about symptoms

[lukeforum1997]

Hi all. Firstly, I just wanted to say that I admire each and every one of you for your strength, courage, and support. This forum is a community of truly remarkable individuals.

Like many others who have posted here, I am hoping to share some of my symptoms and get some advice on my situation as it has really been consuming my life these past several weeks.

Context:

• 27 year old white male with no family history of ALS.
• I work a desk job and live a pretty sedentary lifestyle. My posture is pretty horrible, my abdominal strength is weak/poor, and I have not exercised regularly in years.
• Suffer from severe health anxiety, but recently started to see a therapist to address thoughts and improve headspace. I am hyper-aware of my body and any changes.
• Twitching first started in two spots (right deltoid and right glute) on December 14, which was a particularly stressful day for me due to another non-health issue.
• No other symptoms were initially present in those twitching areas but once I googled "muscle twitching" and stumbled across ALS, I started to have weakness in my right arm within a few days that has not gone away. Weakness is more heaviness, fatigue, and soreness while trying to do things. Arm feels stiff, and cracks at certain movements. So far I have not lost the ability to do any tasks around the house, though some seem like more effort is required.
• Twitching has been most prominent in my right deltoid (looks almost as if something is crawling under the skin for a few seconds) and typically happens when I am sitting at my desk, at the table, or on the couch. In nearly all of these cases, my arm is bent. I can get rid of the twitch if I move my arm.
• I will occasionally get twitches in other body parts (forearm, left arm (including deltoid area), biceps, triceps, calves, eyes, back), but these are less frequent and not as dramatic. These twitches tend to last just a second.
• I do not notice twitching while sleeping, but my sleep has been much more disturbed and less effective. Think this is due to the anxiety of the situation. Definitely feeling very fatigued overall.
• Saw my PCP a few days after twitching started and did bloodwork (all normal) and was referred to neurologist for EMG at my request. My PCP told me not to worry.
• Due to some EMG cancellations and calling daily, I was able to get an EMG for Dec 22, just 8 days after initial onset of symptoms. Needle test was normal but the nerve test showed some mild ulnar neuropathy. I've included the results of the EMG/NCS below, as well as the neuromuscular specialist's impression. The neurologist specifically said it was not ALS based on findings, which I mostly believe, but I worry this is just a really early onset and could not be picked up quite yet.

As I was looking through these forums I came across this post and started to freak out again given some of the similarities in location of twitches and weakness. I've read through every sticky/pinned post and found that based on the findings it is unlikely this is ALS, but part of me is still afraid that the testing was done too soon and it will continue to develop. I have some questions for the group and I'm hoping that the answers will help ease my mind.

Questions:

1. At just 8 days post-twitch, is it possible that the EMG was done too soon? I had weakness in right arm and twitching prior to EMG, but twitching and weakness has felt worse since then. I know the sticky post says a clean EMG = No ALS and it cannot be done too soon, but I was able to get an EMG just 1 week after symptom onset, which seems a lot sooner than nearly everyone on this forum.
2. I've read a lot about BFS and that it typically impacts muscles at rest, though I'm having a hard time understanding exactly what rest means. If my arm is bent while working at desk, is my deltoid technically at rest? I can feel the twitches even when I am typing sometimes.
3. Is the prominence of the twitches I am getting and the predominantly right deltoid location concerning? I also have read that BFS twitches are usually less prominent and jump around pretty frequently (though you can have hotspots that twitch for a few days).
4. I was hoping that symptoms would go away or at least feel better after starting to work on myself and attending therapy. It's only been a few weeks since my EMG and only a few weeks since starting these new habits. Am I expecting improvement too soon?
5. Is there anything concerning about the ulnar neuropathy? I do not recall having any trauma to my arm but do know that I have been on my phone and have my arm bent a lot at work because I work a desk job.
6. I have made a promise to myself that every day I will work to let this go. I have been telling myself that only something like a loss of ability to do something I have always done (brush teeth, lift arm, etc.) would make me need to contact a doctor again. Am I thinking about this the right way?

I truly appreciate answers and feedback to these questions. I know my anxiety is through the roof, but I know I will greatly benefit from hearing from you all.

EMG/NCS Results:

Brief neuromuscular examination reveals normal strength throughout both arms and legs. Normal 2+ reflexes in the arms and the legs. Negative jaw jerk.

Sensory NCS
Nerve / Sites Rec. Site Onset Lat Peak Lat NP Amp Distance Velocity Temp ms ms µV cm m/s °C
R Radial - -Snuff
Forearm Snuff 2.0 2.56 61.0 10 50.5 32.1
R Sural - Lat Mall
Calf Lat Mall 3.3 4.27 31.8 14 42.3 32

Motor NCS
Nerve / Sites Distance Segments Latency Amplitude Velocity Temp. d Lat. cm ms mV m/s °C ms
R Ulnar - ADM
Wrist 7 Wrist - ADM 3.92 10.3 32.1
B.Elbow 25 B.Elbow - Wrist 8.21 10.0 58.3 32.1 4.29
A.Elbow 10 A.Elbow - B.Elbow 10.50 9.5 43.6 32.1 2.29
R TIBIAL - AH
Ankle 8 Ankle - AH 7.10 23.4 32.1
Knee 40 Knee - Ankle 15.85 20.6 45.7 32.1 8.75
L TIBIAL - AH
Ankle 8 Ankle - AH 5.40 17.1 29.2 E

MG Summary Table
IA Fib Fasc Other Amp Dur PolyP Activation Recr
Muscle - - - - MUs - MUs - MUs . Pattern
R. Deltoid Nl 0 0 0 Nl - Nl - Nl Full Nl
R. Biceps Nl 0 0 0 Nl - Nl - Nl Full Nl
R. Triceps Nl 0 0 0 Nl - Nl - Nl Full Nl
R. Pron Teres Nl 0 0 0 Nl - Nl - Nl Full Nl
R. First D Int Nl 0 0 0 Nl - Nl - Nl Full Nl
R. Vast Med Nl 0 0 0 Nl - Nl - Nl Full Nl
R. Tib Ant Nl 0 0 0 Nl - Nl - Nl Full Nl
R. Gastroc (M) Nl 0 0 0 Nl - Nl - Nl Full Nl

Results:
1. Right radial and sural SNAPs are normal.
2. Right ulnar-ADM CMAP has reduced conduction velocity across the elbow with normal amplitude.
3. Bilateral tibial-AH CMAPs are normal.
4. Needle EMG is normal as tabulated.

Impression:
This an abnormal study. There is electrodiagnostic evidence of a mild right ulnar neuropathy localized to the elbow. This is likely incidental to the presenting complaint of muscle twitching. Otherwise, there is no electrodiagnostic evidence of a generalized disorder of the lower motor neurons or of a generalized large-fiber polyneuropathy. His muscle twitching likely represents benign fasciculation syndrome.

 

[Nikki J]

You saw a neuromuscular specialist already. Sean did not until his third emg. Also we have no idea what the first emg really looked like
We know your emg is completely normal and apparently so is your exam

1 you don’t have clinical weakness you have perceived weakness that started after reading about als. Classic health anxiety presentation

2 at rest is not usingthe muscle. But twitching doesn’t,matter and it isonly the anxious who try to analyze it

3see 2

4 you haven’t committed to recovery. You are here and searching ancient threads. Of course you aren’t better. But yes even with commitment it takes time

5 not for als. Stop leaning on elbows and forearms. Check your keyboarding position

6 yes. And I really really hope you don’t fall into the traps of hypervigilance and worse self testing

Sign off here block als websites and fire mr google

Good luck

 

[lukeforum1997]

Thank you Nikki, I needed that. I appreciate your message. Wishing you the best of luck.