Posted by tim in I Feel Sick on September 18, 2023

For the last few years I've been dealing with what my neurologist has called Cramp Fascination Syndrome in the left side of my body. Starting earlier than that, I have been dealing with Idiopathic Transient Aphasia. All my life, I have also dealt with what I can best describe as panic attacks.

I've been able to manage until recently. There would be times of more degraded ability, but for the most part it was a thing that came and went. I'd bounce back and be able to live as normal. But this past weekend I have started to notice something: My left arm has really lost muscle tone and strength, particularly in my forearm. I noticed it first when I was driving. If I had only my left hand on the wheel as I came to a stop, either a stop sign or a red light, as the forces of inertia kept me moving forward while the vehicle stopped, that arm would not be able to resist the mild forces and would begin to shake and ache like crazy.

It became more apparent at an event we took Jr to, where I helped operate a small rope bridge exercise for the boys for a bit. All I really did was grab the two upper ropes and pull them together and downward for the smaller boys to be able to reach them. But in doing this, the shaking and aches would reappear, but only in the left arm.

Yeah, I'm right-handed, and my right side is more toned than my left, but I have always been seen as the strongest person around and have had almost no issue with any task handed to me. The disparity between my arms wasn't enough to limit me or cause concern until now.

I'm not medically trained in any way beyond basic first aid, so my own self-diagnosis is not likely anywhere within accurate. But with that in mind, most doctors are surprised at how much I know and how close I can get to a diagnosis on my own. Because of that, I have been able to identify two possible conditions that account for all of this:

First, there's Multiple Sclerosis. I have had several tests to determine if that's what it is, and the doctors who have done the test have said "no, this isn't MS." But yet, the more I have read about it, and having one doctor suggest it might be MS, I am thinking that it's not been excluded from a possibility. In all that I have read, I've learned that there's no specific shaped hole that the person has to fit through for it to be quantified as MS; it's a complex disease and has a lot of variability between people who have it.

Second, there's Spinal Muscular Atrophy, or SMA. This is much more serious than MS, but can be managed to live a full life. I am less convinced that this is what it is though, as there aren't enough connections between my symptoms and it.

And finally, there's Amyotrophic Lateral Sclerosis, or ALS, or Lou Gehrig's Disease. this is the most concerning but also seems to be coming more into view as a likely thing. Some of the symptoms include muscle atrophy and problems swallowing. I definitely have muscle atrophy in my left arm and hand, and it's been quantified by my neurologist. But this increase in atrophy has me more concerned. As far as the swallowing issues, I have always dealt with a random choking sensation when I try to swallow my saliva. It doesn't usually last very long, but it does happen frequently.

I'm pretty freaked out at the possibility of it being ALS or SMA, but I can probably manage if it is MS. The more I've read about MS anyhow, I've come to think it's probably the same as Jed Bartlett's MS, relapsing/remitting, given that I have periods of feeling perfectly normal and healthy, punctuated by periods of pain and struggle around all my symptoms.

I'll try to keep this updated with the most current description of what's going on and what doctors think it is as I learn more.

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