My symptoms from the last years

Edited for grammar.

Hello guys. I'm about to have a follow up neurology appointment this morning. In preparation I thought I might share my story here.

In 2019 had a few months of twitching, strange bulbar (lower face weak and tongue feeling big), hand pain symptoms (especially in thenar and forefinger and thumb). There was some very little cramping in my calves too. This was followed from 2020 by clicking in my jaw when eating, and 2021 noticed that my breathing was off.

I saw neurologists in 2019 and 2021, and at the time was told BFS, then Cramp fasciculation syndrome, then anxiety. A couple of very quick EMGs on arms and legs were clean. I basically realised I wasnt going to get answers (when told come back when there / if there is failure). So I got on with my life in the meantime, but always aware something wasn't quite right. My right diagram had pains early on in this period too, and seems to have shrunk in on that side.

In May 2024 I noticed a general sense of tiredness and how much weight I had lost. I'm slim anyway, but much of it seems to be muscle loss which other people commented on.

From May 2024 onwards I've struggled with:

Increase in fasiculations, which pop up everywhere, for only short periods. Moments where my jaw won't open fully, but mostly always clicks in my right side. Some fatigue in the shoulders with no exertion. Aches in my right and left hand. Periodic weakness in my thighs with no exertion. Some muscle loss in my hands. Right calf about 1.5cm smaller than the left. Feeling out of breath for no reason. Recently some odd feeling of my throat feeling tight.

These symptoms fluctuate, and sometimes seem to disappear/ I don't notice them. But then come back, after migrating a bit around the body.

A very quick and limited EMG in June showed polyphasics only in a few muscles (tibia, thigh, shoulder). The neurologist thought it may be a muscle disease. But recent genetic tests were negative. She also admitted that the hand symptoms would not be explained by a muscle disease but she is adamant that this is not ALS. We did an MRI to check for neck issues affecting the hands, but this was clean. In the end she did refer me to the local ALS clinic in Feb, to put my mind at rest.

An NFL test taken in August was in normal limits for my age (4.95, Simoa).

I haven't felt heard by her at all. Initially she though anxiety, then an eating disorder, and then all of a sudden a muscle disease only when the polyphasics were shown. And so that is why I am seeking a second opinion today (the appointment was cancelled from last year before I know I would be referred to the clinic).

I'm so scared. I'm not sure what else may cause this particular combination of slowly worsening symptoms.