So it's that time again, another neurologist appointment behind me and here I am again, still pretty much in the dark.
As I said on facebook, that the two main options right now are SLE/Lupus and some sort of Migraine possibly caused by other things.
The thing is neither of these really fit what is wrong with me. As I said, in my last post, we are heading into rare conditions in terms of diagnosis.
If it is migraine based, then the type of migraine is a generalised migraine with no pain plus a bunch of really abnormal symptoms. Basically, the list of symptoms I have don't really fit with any description of migraine. Silent Migraines do exist although rare, that is without the pain. The vision stuff is vaguely normal, the panic attacks at a pinch. But the occasional stuttering, lack of co-ordination, twitching and basically screwing over of some of my senses is not migraine behaviour. So I have to have SPECT scan with more radioactive substances to monitor the blood flow in my brain for like 2 hours.
Lupus is known as a great imitator, like Multiple Sclerosis and Cancer, it takes on many forms, and basically has a wide range of possible symptoms, because it is characterised by inflammation only basically, a little bit like Rheumatoid Arthritis, but not just in the joints. It is not progressive as such, but it does do a lot of damage, as an auto-immune condition it is caused by a overactive immune system, where the immune system gets things really wrong basically and starts attacking it's own bodies tissue.
The thing is with Lupus, it's main characteristics are a skin rash, which I don't have and joint pain which I also don't have. It pretty much means it's occurring in my brain only. I said it's 40 in 100,000 - 5 in 100,000; the brain factor is heading into 1-5 in a 1,000,000 or less.
The thing is, I really hope it's not Lupus, I mean if that's what it is, that's what it is. Thanks to medication, I could live a normal length of life, although shitty at times, really really shitty, but hey, life (It's a weird attitude to have, but I figure death is coming one day anyway). My main issue with it, is that Lupus is a chronic pain condition treated mostly by opioids. I am allergic to codeine which demonstrates a sensitivity to opiates meaning I can't take them.
The reason they think I may have lupus is I tested positive for Antinuclear antibodies, or ANA. That is an indicator for auto-immune conditions but it also just randomly exists in like 10% of healthy people. Like the question is whether it is actually doing anything, or just sorta sitting round. So I have to have more tests, excess protein excretion, some other chemical that is an indicator of Lupus but only exists in like 1% of healthy people, some other things I don't understand and don't really want to know.
Anyway that's where it's at right now. Sorry to be a buzzkill with this whole thing. It's not a very pleasant topic I am aware. But hey, modern medicine is fucking great, so that's a thing (people in the 50s lived less than 5 years with Lupus, now it's like 50 (isn't that fucking great? Like holy fucking shit, that's 10 times the amount of time, that's fucking wondrous, if I don't have it, people that do, get to live 45 years longer and have a much better quality of life than 60 years ago, imagine what they could do in 20, like holy fucking shit guys, get excited about pharmacology with me))
As I said on facebook, that the two main options right now are SLE/Lupus and some sort of Migraine possibly caused by other things.
The thing is neither of these really fit what is wrong with me. As I said, in my last post, we are heading into rare conditions in terms of diagnosis.
If it is migraine based, then the type of migraine is a generalised migraine with no pain plus a bunch of really abnormal symptoms. Basically, the list of symptoms I have don't really fit with any description of migraine. Silent Migraines do exist although rare, that is without the pain. The vision stuff is vaguely normal, the panic attacks at a pinch. But the occasional stuttering, lack of co-ordination, twitching and basically screwing over of some of my senses is not migraine behaviour. So I have to have SPECT scan with more radioactive substances to monitor the blood flow in my brain for like 2 hours.
Lupus is known as a great imitator, like Multiple Sclerosis and Cancer, it takes on many forms, and basically has a wide range of possible symptoms, because it is characterised by inflammation only basically, a little bit like Rheumatoid Arthritis, but not just in the joints. It is not progressive as such, but it does do a lot of damage, as an auto-immune condition it is caused by a overactive immune system, where the immune system gets things really wrong basically and starts attacking it's own bodies tissue.
The thing is with Lupus, it's main characteristics are a skin rash, which I don't have and joint pain which I also don't have. It pretty much means it's occurring in my brain only. I said it's 40 in 100,000 - 5 in 100,000; the brain factor is heading into 1-5 in a 1,000,000 or less.
The thing is, I really hope it's not Lupus, I mean if that's what it is, that's what it is. Thanks to medication, I could live a normal length of life, although shitty at times, really really shitty, but hey, life (It's a weird attitude to have, but I figure death is coming one day anyway). My main issue with it, is that Lupus is a chronic pain condition treated mostly by opioids. I am allergic to codeine which demonstrates a sensitivity to opiates meaning I can't take them.
The reason they think I may have lupus is I tested positive for Antinuclear antibodies, or ANA. That is an indicator for auto-immune conditions but it also just randomly exists in like 10% of healthy people. Like the question is whether it is actually doing anything, or just sorta sitting round. So I have to have more tests, excess protein excretion, some other chemical that is an indicator of Lupus but only exists in like 1% of healthy people, some other things I don't understand and don't really want to know.
Anyway that's where it's at right now. Sorry to be a buzzkill with this whole thing. It's not a very pleasant topic I am aware. But hey, modern medicine is fucking great, so that's a thing (people in the 50s lived less than 5 years with Lupus, now it's like 50 (isn't that fucking great? Like holy fucking shit, that's 10 times the amount of time, that's fucking wondrous, if I don't have it, people that do, get to live 45 years longer and have a much better quality of life than 60 years ago, imagine what they could do in 20, like holy fucking shit guys, get excited about pharmacology with me))
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