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MDedic

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Hi, I'm in a guy my early 30s. I'm a MD, but not neurologist.

I'm looking for some help and maybe infos about ALS. I don't have any family history of MND.
My story began in December 2021. When I came back from work, I started twitching. My both calves had fasciculations. Firstly I didn't thought about it, because there were many reasons of twitches, esp. coffee, hypomagnesemia etc. Last thing on my mind was ALS.
But the times go by and my calves were twitching like crazy. I didn't notice any kind of weakness, my neuro exam was normal, so okay. Just living with it.
In February 2022 I started to waking up at night because of parsthesias/numbness of my hands, especially 4th and 5th fingers. I went to the another doctor, made an cervical X-ray. Results: reduced cervical lordosis, degenerative changes, narrowed intervertebral space C6-C7.
I bought orthopedic pillow and that was good idea. But the fasciculations still were with me and they irregulary spread all over my body with constant presence in my calves. I noticed, that stress,caffeine and working out aggreviating them.
So, I went to neuro specialist in april, she examined me, check all the reflexes and told me: I understand that that you are concerned and thinking about MND, but in my opinion it's just BFS. From anamnesis I assume, that you are very stressed person and a think it's just this. There's no atrophy, no weaknes, no patological sign/reflexes.

I came back to my life, but started feeling more and more twitching. Made an another appointment to another neuro, she examined me and could even find twitches. She told me: no patological sign, maybe some tendencies to Babiński on right foot, but maybe it's just my perspective. In my opinion it's BFS. But I'm giving you refferal to hospital, check if you arent sure about my examination.
Nocturnal numbness in both hands came back.

I take a blood tests and only deficit I had was a vit. D (13 ng).

I went to third neuro. After exam, she told me that l have an anxiety and in her opinion it's just BFS. She gave me vitamin B complex. That was ca. 12th of May. I called my friend, who's mother is neuro and she told me the same thing, moreover she gave me a chance to being admitted to hospital.
About half of May I started to feel some strange things about my arms. It just like they aren't mine, like both tricepses are weak. Okay, so new symptom? Weakness? I started to feel like my hands lost their dexterity.
Of course, MND is about falling, not feeling. I still could do 60 pushups, so no - it's not that.
But later I started to feel that many of everyday things are a little harder for me. For example, brushing teeth because of those tricepses. I felt like they aren't mine and it's heavier.
And then, everything started to getting worse. I'm a MD, but I did the worst thing that person can do in this kind of anxiety - started to read about MND in the internet and started to examine myself. I examined myself with brisk jaw jerk and percussion myotonia. In the same moment I remembered that I'm having swallowing issues (oropharyngeal fase propably, examined by ENT specialist) since May 2020 (2 years). So I panicked, that brisky jaw jerk, swallowing issues, fasciculations equal... ALS.
Of course in this situation I called neuro and made an appointment in hospital (from Monday).
I'm really afraid about this. In a week my symptoms aggreviate - now I feel all the time weakness, my lips and nose started constantly twitching, my tricepses, which I assume are weak and "strange", started to twitch and painfully jerk after any exercise or move.
To sum up: constant calves twitching since December, nocturnal numbness from February, weakness of both tricepses from one week (arms like after very long workout), painful jerks in arms, calves from one week too. I'm full of anxiety and I understand power of mind/somatization, so I'm not convinced about truth of all symptoms.
Since I examined myself, I cannot eat, I cannot sleep well without meds and after short nap, I'm waking up with numbness in all of the limbs. My anxiety is killing me. I don't know answer for the question "could it be als?", but I'm encouraging myself to find that out. As a MD i know any other stuff that can be reason of those complaints. Many things are for, many against ALS.
I made this post, because during my hospital appointment I will post here any updates. Hope that somebody find that useful.

Wish me luck.
 

wishmobbing

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You being an MD and understanding about anxiety I don't get why you visit with three and talk to a fourth neurologists (all pointing you away from ALS) yet never talk to someone specialized in psychosomatics or at least psychology.

Good luck for your hospital stay. Try to keep an open mind or doctors will just try to assure you that your worst fears are unfounded when they could also help you to get to the bottom of this.
 
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affected

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You haven't actually asked an outright question, which is what this section is for. But I'm going to jump in and say that you are really insightful in that you know you are highly anxious, and you know you have fuelled this by searching online and trying to perform self tests.
We won't argue against the very good advice you have been receiving from a neurologist right through this as they are examining you and reading your test results.
There are forums for health anxiety and BFS that may be better platforms for you as all we can say is that your are not showing clinical weakness and your neurologist has been telling you for 7 months that this is not ALS.
Please do continue to get help, and let us know the final diagnosis, but we really can't help further I don't think.
 

MDedic

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Thank you for your respond. I already visited a psychiatrist, she prescribed me drugs, I'm starting therapy regardless of neuro diagnosis. I don't know what is happening to me, but I understand how I made it worse.
 

lgelb

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If you're low on vitamin D, that can certainly cause/worsen twitching, and begs the question of why you are deficient as well. I trust you are supplementing judiciously and rethinking your diet/outdoor exposure. Dehydration and/or electrolyte imbalances can underly many of the issues you describe, and exercise/bodywork can improve many. Given the C-spine results, nocturnal hand numbness could well be a positioning/postural support issue. Time to look at the pillow, mattress, maybe do a sleep video...

I think you know the onset pattern you're describing isn't an ALS pattern. We all cherry-pick the evidence from time to time. Happy to hear you're seeking counseling.

Best,
Laurie
 
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MDedic

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Hi again,

Thank you for your comments and for your time.
After the hospital, in lab, everything was normal.
Although, in EMG: in left musculus interossalis I and right triceps brachii single fasciculations and chronic reinnervation (interferential with high amplitude in voluntary contracion). In the other muscles (left deltoid, left vastus femoris, left sartorius, right tibialis anterior) everything normal, even without fasciculations.
NCS: discrete damage of both ulnar nerve and changed CAMP morphology.
Conclusions: damage of both ulnar nerves with chronic reinnervation in innervated by this nerve muscles (left interossalis I and right triceps brachii).
MRI: everything went normal, except for C4-C5 and C5-C6 hernias with compression of dural sac. Spinal cord without pathology.

I don't know what to think about this. I saw EMG/NCS at home and all my life I was thinking, that triceps brachii is innervated by radial nerve (C5-Th1), not by ulnar nerve (C8-Th1). Of course they some common roots, but still... Doctors told me that there's no evidence of MND/ALS in my examination, maybe radiculopathy problem.

Fasciculation and cramping-like pain in both tricepses are still my problem. I started anti-anxiety therapy.

Main question: could those findings, fasciculation and chronic reinnervation in two muscles, are, in your opinion, something to worry about?
I have an appointment with neuromuscular specialist, but have to wait ca. one month.
 

lgelb

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For future readers:

"Ulnar neuropathy at the elbow is the second most common compression neuropathy of the upper limb, after carpal tunnel syndrome.

"Ulnar nerve subluxation occurs in approximately 16% of healthy individuals, has no age or sex predilection, can be unilateral or bilateral, painful or painless, and can have associated ulnar neuropathy.

Although it most commonly occurs in the cubital tunnel, other variant structures, such as aberrant slips of the triceps brachii, can compress the ulnar nerve around the elbow or arm."

This has nothing to do with ALS but may suggest a surgical consult.
 

MDedic

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Thank you lgelb :)

I have a question: does "in left musculus interossalis I and right triceps brachii single fasciculations and chronic reinnervation (interferential with high amplitude in voluntary contracion" means that I have a active denervation (simple fasciculations) and chronic reinnervation too?
 

KimT

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Some doctors now consider fasciculations evidence of active denervation. Others insist that positive sharp waves and fibrillations are the only evidence of active denervation. My first EMG showed fibs but didn't pick up the fascics. I knew I had them but they didn't pick them up. I could see them and even the doctor could see them. But the fact that I had fibs was more indicative of active, back in 2015, at least.

Also, in order to be ALS, the denervation, both active and chronic, needs to be widespread. Otherwise, it's more likely an injury or specific muscle(s) issue.
 

lgelb

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The criteria for labeling a muscle as undergoing chronic neurogenic change as part of an ALS dx are here.
 

MDedic

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Thank you so much for your help, knowledge and experience.
I am still afraid so much, but I decided to trust my doctors. If they told me that my symptoms are not associated with this disease, conviction that I know better in burst of hubris/anxiety is very harmful for me and for them. Especially because I'm not a neurologist.
It's really hard for me to change the perspective and being a patient.
Wish you all the best.
 

Nikki J

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Take this as a learning experience to make you a better doctor. A serious illness or anxiety about one can teach you a lot about how it is on the other side
 

wishmobbing

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It's good to hear that you're willing to change the perspective and be an informed patient only when it comes to yourself. It's well worth the effort and the recurring inner struggle to stay in this place. I think Nikki is right, it will give you empathy with patients other doctors might not understand so likely.
 
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