Looking for guidance

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Hans79

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Hi everybody,

First of all thanks for your support.

My symptoms started a couple of months ago, when I started experiencing massive cramps in the left peroneus muscle when I was walking in the forrest as soon as I was going at higher pace / the ground was steeper. It was up to the point that I had to stop walking and rest, and some hard "nodules" could be felt under my skin on the peroneus. Since I was a little bit overweight, I did not pay so much attention and attributed it to my bad shape.

Then more recently in September, 1 month after my second Pfizer covid-19 vaccine, I started to experience fasciculations mostly in my calves and then also in other parts of my body, but to a smaller extent.

This motivated me to go to a neurologist in October. By the time I got the appointment, new symptons developed.
I started to feel a kind of "burn" sensation in my left leg (gastrocnemius) when it is in contact with a surface (like the sofa), and then with weeks passing by it became more or less constant. Sometimes spreading behind the knee (popliteus) or above, but usually focused on the gastrocnemius.

When I got the neurologist, she performed some EMGs (Tibialis, Biceps, Shoulder, but not gastrocnemius) and did not find anything abnormal apart from increased latency in the tibial SEP (Somesthesic Evoked Potential). She then referred me to:
- get checked by phloebologist / angiologist who excluded any blood vessels issue,
- get a left calf MRI, did not see anything
- get a brain MRI, nothing found
- get a full spine MRI, nothing found
- see an orthopedic and get a walk analysis, the technician told me he thinks my left peroneus / calves are a little bit weak

She is not sure what is going with me.
Last week, she performed once again an EMG and NVC study this time on my 2 gastronecmius: the right one was normal, but the left one showed abnormalities on the EMG (but both NCS were normal). She did not provide the detailed numbers for the EMG, but gave me screenshots of the records (see attached) along with this explanation "Dense interference pattern, but almost huge potentials" (translated from german).

She wants to send me to more specialized neurology clinics to find out what's going on, but the timeframes are very long (several months before a first appointment).

As you can imagine by posting here, I am very upset about this especially with the combo fasciculations / abnormal EMG / exclusion of many other pathologies.
It is very difficult for me to find guidance, here in Germany the doctors keep a lot of details for themselves and you usually do not get the full picture.

Any advice how to proceed / thoughts on my experience so far would be appreciated.

Thanks a lot

Best
 

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lgelb

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If you can obtain the table of findings, that would be more helpful than the tracings. But with fascics, cramps, a burning feeling and maybe some hint of damage in one leg, it is hard to worry about ALS as yet. Ongoing clinical weakness is the most telling sign and you have not described it. And, rest assured, there are many pathologies, minor and not, that would not be seen on the tests you've had, including a chronic injury. Fascics in themselves are not important.

Best,
Laurie
 

Hans79

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Thank you Laurie for your feedback.

I've read the pinned posts and know that sensitivity issues like burning I'm experiencing are not consistent with ALS, but the other findings made me upset as she did not excluded that as a potential cause.

Re-reading her notes I could find additional information I overlooked in my first post:
"
- EMG M. Gastrocnemius Caput Lateralis: no spontaneous activity
- Left side: elevated amplitude and questionable polyphasie; dense interference pattern
- Right side: by voluntary contraction (by patient, myself), sub interference pattern (because of pain?)
"

Her last comment is the following:
"
No explicit neuropathie. Only on the EMG questionable light neurogenic changes, but NCS are all intact.
Tibialis SEP on both sides have delayed latencies, but no evidence of central compression.
So could it be isolated (auto-immune)? Neuropathie? Focal myositis?
Perfom a CK measurement and a Knee MRI, looking for exclusion of Neuropathie / Polyneuropathie
"

We talked several times about ALS, she wants first to investigate other potential causes but did not rule it out as of now (hence my post in the community).
 

lgelb

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Her last comment is very much suggesting other causes than ALS, was my point, which still stands.
 
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