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I'm a 25 year old male with little history of health issues. I feel quite certain that I have ALS and I was wondering if anyone had any kind advice to offer. Apologies for the long post but I feel like the onset of symptoms has been quite odd and perhaps worth sharing.
The story starts six weeks ago on the 18th April when I woke up with what I assume was some kind of virus (fever, nausea etc.) This lasted a couple of days during which I felt incredibly fatigued and had strange episodes of lightheadedness as if I'd skipped taking a breath. My tongue felt strangely fuzzy and my voice was strangely hoarse. On the second day my chest felt very tight, almost as if there were a band around it. These symptoms cleared after two days.
Over the next few days I noticed my left arm and leg felt somewhat achey. Because (admittedly) I'm a hypochondriac, I compared my left and right thigh and found that the left was smaller than the right by some margin. I started testing my strength by standing from a seated position on one leg - while I could do this with either leg it was more difficult with the left. After that, I started feeling a grumbling sensation around my left knee and soon was experiencing fairly constant fasciculations worming their way up and down both legs, or sometimes popping over them. There is sometimes a sensory aspect to these in that they can feel like something cold or warm dripping down my leg.
Not long after that I started getting single fire twitches all over my body (including back and face) which have gradually turned into florid ones. Lots of tiny ones on my left hand and foot along with vibrating sensations (some on the right also). There was a burning sensation in my left knee/thigh and it has gradually become stiffer to walk upon.
On the 23rd May I went to see my GP who did some basic strength and reflex tests which were fine. He examined my thighs and said that although the left was slimmer than the right, it was within a normal range. And fasciculations don't mean that much. He said he thought I was fine but to go back in three or four weeks if I thought anything had progressed.
Within the week after that appointment, I noticed some atrophy on my left foot (ball and arch) which has been getting progressively more sore to walk on without shoes. I also noticed some atrophy around my left thumb and palm in the split hand formation, and have been experiencing some burning pain. My left leg and arm have grown increasingly stiff and easily tired, and the right arm and leg are beginning to also. I feel as if my startle reflex is becoming exaggerated and I'm experiencing quite a lot of limb jerking at night.
On the 28th I started feeling a lump in my throat and upon looking in the mirror noticed that my soft palate had dropped; it has been doing so sporadically since then. My tongue seems fine although I can't judge if there are fasciculations (possibly upon sticking it out but not upon resting). The fuzzy tongue feeling from when I had the virus is also sporadically returning along with some hoarseness. I also noted some significant atrophy on the left side of my upper lip, although oddly I haven't experienced anything in the way of speech difficulties (that I have noticed) and can still pucker etc. I don't feel as if my tongue is any weaker.
This led me to take another visit to my GP on 30th May (a different one this time) who also carried out some strength and reflex tests which he said were fine. He did the Babinski test which elicited no response in either direction. He also took a look at my left hand and foot and didn't have much to say about them. I felt my foot fasciculating whilst he was looking but he said he couldn't see anything. He said there was nothing that would lead him to refer me to a neurologist on the NHS but that I could see one privately if I wanted leave of mind.
Since the appointment, I've noticed my breathing becoming more difficult after exercise (although not upon lying down). My left hip and shoulder are becoming stiff and sore, and I think my thigh has become thinner, although bizarrely my knee seems less sore. In these circumstances, do I sit it out until things get worse and the GP will refer me, or do I shell out for a private neurologist (which I don't really have the money for)? I'm struggling to think of what else I could say to the GP to get a referral.
I'm struggling with this situation because my parents and everyone else are convinced that it's just a case of health anxiety and it breaks my heart that they don't know what is really happening. I am an anxious person and in the past I've had a head jerk tic when stressed which I'm worried has contributed to this progression, and I'm experiencing immense feelings of guilt over that. I feel as if I won't get a referral to a neurologist until something fails completely and I'm not sure it's wise to wait for that.
When I think back, I've been a shallow breather (not much diaphragm use - feels stiff) and a clumsy swallower for many many years - since my teens, say. Can these things lie relatively dormant before a proliferation of symptoms is triggered later on? I've noticed extra pressure on my left knee for a while too.
Any informed input would be appreciated - thanks in advance.
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