Atrophy, clinical weakness and twitching…really scared

[Scottishgirl]

Hi all,

Thank you to everyone who participates in this forum, offering such helpful advice. I’m conscious of people’s time so will try to keep this relatively brief. I hope you don’t mind me posting but having had atrophy and weakness confirmed by a doctor I am increasingly worried.

30F normally in good health. In February (2023) I started feeling weakness in my right hand, had suffered from bad fatigue for a few months and developed twitching all over my body. I was conscious my weakness was likely perceived and twitches normally mean nothing so tried to ignore it. I also had tingling in my right hand which continues intermittently today.

After a few weeks my hand was still concerning me so I visited my GP, who said she could not see any atrophy in my right thenar and did not think I had clinical weakness. I was quite anxious at this point - my sister was diagnosed with MS last year which has made me more aware of neurological issues - and then saw a neurologist privately in early March for peace of mind and to draw a line under the matter.

The neurologist concluded:
- potential slight atrophy in the right thenar
- tone and strength normal in all muscle groups
- reflexes were present and equal
- possible carpal tunnel syndrome, routine referral for NCS/EMG (I’m waiting for a date)

The neurologist advised me to try and put worries about ALS out of my mind as I didn’t have clinical symptoms to suggest that.

I did just that and moved on, I still felt my hand was weak and that I could see wasting which was getting worse but ignored it as best I could. However, in the last 4-5 weeks I have been struggling again noticing that daily tasks are becoming more difficult (gripping a pen, buttoning, holding a cup etc).

I also feel like the thenar is aching and using my hand - particularly abduction of the thumb - is difficult. My fingers on the right hand also twitch side to side daily (I have twitching in other places too) and I feel (totally subjective I appreciate) that my hand looks worryingly like split hand sign.

After putting it off I went back to my GP last week, who said this time there was visible atrophy in my right thenar and my strength had definitely decreased in my right hand since my last visit in Feb. Her view was that carpal tunnel was still the likely explanation but is trying to expedite my referral for NCS given the atrophy + weakness.

I had a clean brain + thoracic spine MRI in Nove 2022 which was related to another matter.

So I was hoping for any advice or guidance regarding the manifestation of my symptoms and timescales:

- is it possible/likely for CTS to cause visible atrophy and clinical weakness in this timeframe (10 wks)

- can ALS manifest in the same timeframe, would there be other things I would be noticing first?

I’m trying my best not to worry, but really am struggling and feel that things are getting worse.

I’m aware of the statistics given my age and the fact sensory symptoms point away from ALS , but think given my sisters condition I am more conscious that for some people the unlikely diagnosis ends up being the correct one.

Thank you for reading this and I hope I haven’t caused any offence by posting here.

 

[lgelb]

Yes and unlikely. But the possibilities are not only CTS and ALS, of course. You are aware that aching and tingling point away from ALS. I'm sorry to hear about your sister, but however her condition emerged, probabilities are probabilities and I don't see ALS in what you describe.

Since CTS and ulnar neuropathies are generally overuse injuries, it can be a valuable use of your time (self-assessment for split hand or other signs is not) while awaiting the EMG to reassess your arm positioning at work, rest, sleep, and play. There are also simple exercises and stretches that can help.

You are not a prisoner of the testing schedule in terms of improving how your hand feels, and there is no point to holding yourself emotionally hostage to fears of ALS, either.

 

[Scottishgirl]

Thank you for your kind and helpful message, I really appreciate it.

Like you say, I’m trying to focus on the fact there can be other explanations. I am also trying my best to focus on self-care and not allowing myself to be held hostage to the fear like you say (not doing as well on that as I would like I must admit).

I forgot to mention in my post above that one of the main reasons I’m quite concerned is that there is now a clear difference (slowness and clumsiness) when doing the finger tap test on my right hand.

Now on my right hand the rest of my fingers claw inward when tapping the index finger to the crease of my thumb, and if I try to straighten them a bit the index finger then straightens and quivers and I can barely tap the thumb at all.

This test deemed completely normal on both hands in March by the neurologist.

As I understand it, this test is an assessment of fine motor skills and can identify systemic/central nerve issues. the deterioration in such a short space of time has really concerned me.

Could this also be caused by an entrapment neuropathy like CTS? Or would it be indicative of a more systemic condition like ALS?

Thank you again for your time, and I won’t post further until I have had my EMG test and results.

 

[lgelb]

I have never heard of ALS presenting initially as a failure on the finger tap test. If there were inability to perform everyday tasks, that would be more significant.

But either failure on the tap or more functional impairment could relate to CTS or an ulnar neuropathy.

 

[Scottishgirl]

Hi there,

I hope it is ok to post my results and a couple of questions following my EMG results (attached).

From what I can tell it is a good outcome, with normal findings. I do have a couple of questions which I would be grateful if anyone could offer advice on…

- Would the EMG have picked up anything concerning even though they didn’t EMG the thenar muscle? This seemed strange given thenar wasting and thumb weakness has been noted, but I forgot to ask at the time.

I thought it may not matter as they tested the limb I’m having difficulty with?

- Motor nerve conduction: there seems to be quite a difference between the median/APB and ulnar/ADM latency at the wrist (3.5ms / 2.4ms) and also the overall M latency (3.6/2.7).

Appreciate they are within normal limits but would the APB ones be classed as nearer edge of ‘normal’ range/ is the difference any cause for concern?

- The results appear to rule out CTS, cubital tunnel or cervical root compression.

I’m conscious this is not a forum for diagnosing people but am at a loss as atrophy and weakness have been clinically noted but there don’t seem to be pointers on NCS, EMG as to the reason.

I understand EMGs can’t be done too early (where LMN symptoms like atrophy, twitching are already noted), however the atrophy is really concerning me. Would anyone know of previous posters with similar symptoms and their cause? This is something I will also follow up with my doctor.

As ever, thank you to anyone who takes the time to read or respond to this.

This will be my last post (aside from responding to any replies) as I do not want to take up more of people’s time in light of what seem to be normal results. Thank you for your kindness and advice.

 

[Nikki J]

You originally said potential slight atrophy was noted. They weren’t sure. But ALS is a disease of widespread denervation/ reinnervation so it is not necessary to emg every muscle. And yes a weak atrophied area due to ALS should show up on emg in a widespread pattern.

Most posters with hand weakness turn out to have a localized process of some kind.

Your plan to follow up with your doctor is most appropriate. Best of luck to you

 

[Suzannah]

Hi Scottishgirl,

I'm a "previous poster with somewhat similar symptoms", so I thought I would answer.

In 2014, I was diagnosed with an upper motor neuron disorder after exhibiting pretty classic UMN symptoms - spasticity, hyperreflexes and clonus. In 2015, I was "undiagnosed" by the NIH when I participated in a study for motor neuron disorders, as they felt that my symptoms no longer quite resembled a UMN disorder.

In the years since, I have developed progressive atrophy and weakness in both my hands and my feet. My hands, particularly my nondominant left hand, show visible atrophy in the thenar and FDI (first dorsal interrosseus, inbetween the thumb and index finger), both of which are highly correlated with motor neuron disorders. I've lost significant use of that hand, and my grip and pinch strength are very weak in both.

And yet, my multiple EMGs throughout the years do not show nerve damage or muscle damage. No carpal tunnel, no motor neuron disorder, no dystrophy, no neuropathy, no myopathy. Nothing.

I actually just did a blood test last week called Neurofilament Light Chain Test, which can measure biomarkers related to neurodegenerative processes (thanks for the idea, Nikki!) It's nonspecific, so it can't tell you WHAT neurodegenerative disorder you have, just that you HAVE one. Just got the results back and - negative.

Even with so many symptoms consistent with a motor neuron disorder (enough that a world-famous ALS doc diagnosed me with one), it appears I *don't actually have one*. As to what I do have? Still unknown, almost a decade later.

So I say this to you for two reasons:

One: Symptoms can look like an MND and totally not be one

and

Two: Sometimes there aren't any readily available answers. This is something I hadn't understood when I first started down the diagnostic road, but it's something I wish somebody had told me. It's right to investigate things, but be prepared that you might not get an answer, or at least not one right now.

Good luck!
Suzannah

 

[Scottishgirl]

Hi all,

I wanted to update in the hope it may help others.

@Nikki J and @Suzannah thank you for your kind and thoughtful responses.

It sounds like you have been through a really tough time Suzannah. It must be difficult not having an explanation for your symptoms. I hope you’re doing well and that you get some clarity in future.

Your outlook and point about answers not always being clear hit home, as I had become rather fixated with finding an explanation. It was advice I really needed to hear, thank you.

I saw a neuromuscular specialist for a second opinion. Neuro exam was normal with no concerns regarding central nervous system involvement.

Post Covid or radiculopathy were raised as potential explanations for some symptoms.

My symptoms remain but I am now focusing on being grateful neuromuscular conditions are not on the table and working on diet/sleep/exercise, rather than chasing answers.

I hope this helps others who may have worries - as many kind posters here have said probabilities are probabilities and there are many other explanations for the symptoms you may be experiencing.

Thank you again for the kindness and patience of this wonderful community.