The decline in health and fear of the unknown

I know chronic pain. I know it far too well. And the thing about pain is that it kills you slowly but doesn’t actually kill you. There is no damage to be seen by anyone. Even if you are screaming on the inside no one can see a thing on the outside.

It is nothing to be minimized because the price and toll of chronic pain is massive. Often, eventually, there is always a point when you simply do not want to live with it. And when that thought occurs, I really don’t think anyone can judge us for that given the poor chronic pain treatment options and this whole ‘fake it till you make it’ society that demands we grin and bear it.

But this isn’t that story. We can save that for another day.

Undiagnosed health problems and the pandemic

This is a story about undiagnosed health issues during a pandemic. A slow slide downward where you don’t know where the bottom is, and you have no idea when you will be able to see the specialist that will be able to diagnose the problem and help with it. And until then you have no idea what sort of damage is actually happening.

I have had results on an MRI that suggest the ‘possibility’ of MS but my neurologist definitely said I do not present with it. So, all was good I thought. Until things just were not so good. My left side of my body has really not been up to par lately. My eye doesn’t like to blink with the other one when I am tired. My arm went weak and weird. Now I have foot drop in my leg. All on my dominate side as well. Not to say it must be MS but it certainly must be something. And something is definitely not getting better.

Loss of mobility and the fear of getting worse

I have no idea what the cause of these issues is. Multiple Sclerosis is definitely on the table given foot drop is a sign of that. But at the very same time I am waiting to see a blood specialist for abnormal blood work, and it could very well be I have been having small TIAs and not knowing it. Especially since I have chronic migraine with aura- TIAs wouldn’t even be on my radar for symptoms. Either of those could be causing these symptoms.

I am not qualified to eliminate either possibility. One or both of those specialists would be the ones who could definitely help out. Except I don’t see my neurologist this year and I have been on a wait list for the blood specialist for some time. All this pandemic backlog.

And in the meantime, with this drop foot I can walk about seven minutes with my foot skimming the ground and lagging behind the other leg before it gets to the point of tripping on my foot and dragging my whole damn leg. A fifteen-minute walk, normal time, takes a hell of a lot longer and it is so exhausting to lift that leg and pull if forward because it just is so weak it doesn’t lift. And the foot just stops working altogether.

It is a horrible loss of mobility in a short amount of time. And I worry what will come next. Or that it is permanent. Or the other leg might start doing it. Worse is that if I really push myself every day, thinking it will ‘gain strength’ all that happens is that I am so much weaker. I can, and do, fall. And falling is fine. I fall with vertigo a lot. Not being able to actually get up because my legs are too weak… Not Fine. That scares the hell out of me. Not cool.

Also not cool is the fact that if I have MS and it is untreated it will progress. And if I have a blood disorder, in my case causing a crapton of platelets, then I could have TIAs or a stroke before I ever see anyone about it. Or it could be something else entirely like nerve damage in my knee or spine which could become permanent if not properly treated in time- which seems likely at this point since I have absolutely no idea when I will see the hematologist and the neurologist isn’t until January.

Actually, all of it is seriously not cool given I already deal with chronic pain and this vertigo situation. But if anything else is going on I would seriously not like my mobility to be permanently compromised. Obviously that idea is terrifying. And I have no idea what to do about it really. I tried calling and emailing. I am trying exercises at home. I am at a loss here since I don’t even know the cause let alone the treatment. The level of frustration being a patient right now is astronomical. And I would rather not find out the hard way what is going on. But it certainly feels like that is the path I am going down.