From Symptoms to Diagnosis: David’s Personal Health Update and Optimism

Right, here we go. Another edition of What's Involved? So last time we talked, I told you about just coming out of hospital and wasn't feeling too great and I've got the gash in my leg and the polymyatosis was inconclusive. I at least now have a nice scar on my leg so I can make up all sorts of war stories, which is fairly cool. But there was a raft of blood tests as well. And don't ask me what they were. I don't know. I feel like a pincushion. But they did come back and the neurologist and the rheumatologist said that they were thinking that it could be SPS. Now, if you notice the fish tanks in the back, to me, I used to have marine tanks. SPS was a form of hard coral. Little did I know that SPS actually stands for stiff person syndrome. And I was like, Okay, yeah, I might have that. Probably in none of the right places. That's a story for another day. And yeah, so then they decided no, no, no, not not stiff person syndrome. So I was okay, that's a relief. And what they said is it is looks like something called myasthenia gravis, which is like, I guess, like muscle weakness and wasting, which I've been complaining about on top of the CRDP. Just just just so that we can be clear. Okay, I mean, what is the point of going through all of the suffering for concert with you? And that's just me making light of it. Anyway, so they gave me to new forms of medication also don't know what those names are. I've been taking them for about a week now. And I have to say, at this stage, I'm cautiously optimistic there's that muscle ripping cramps are way down. The pain is down to a pleasant manageable level three out of 10. So so that's okay.

The biggest change that I've had, and I'm trying to figure out if this is because I think logically to me, it should be it should be something that plays and plays a role because sleep I was just not getting any sort of form or quality of sleep. I'm sure I mentioned that was diagnosed with sleep apnea as well. Man, do I rack up the issues? Hey, she's like anyway, so I got the machine. I was very, very fortunate. And the light of my life helped me out and we got the sleep apnea machine. It's got a lovely name CPAP. And yeah, okay, just comes up stuff for me anyway. So you step on the mask and off you go and you breathe, etc, etc, etc. And in the beginning, I kept taking it off in the night. And then if I woke up, I'd put it back on I seem to be getting a bit better than that. They reckon you need to aim to sort of, you know, between six and eight hours of sleep with the mask on. But I must say, I think it's making a difference. I think the fact that I'm not waking up like 47 times an hour and having these periods where I'm not breathing for almost 90 seconds and blood oxygen levels going down to, I think it was like 72, 70, 72, somewhere around there. And I reckon the whole blood oxygen thing's fairly important. Now that that's happening, I think it's making a difference. But, you know, as with everything, there's a downside. I guess I'm definitely not the most sexy person you could ever wish to sleep next to at the moment. Can you imagine waking up next to that? Actually, it makes no noise. And this, of course, it like comes unplugged or there's a gap around it. Okay, then then it sounds like a flippant turbine. But other than that, it's cool. So new, new myasthenia gravis and new medication. I'm feeling a lot more upbeat and a lot more positive about the world. And I and it's strange because I used to be very fit and quite strong and fairly muscular. I had what I would I would call, I don't know, not big bodybuilder muscles, but martial arts muscles, so fast twitch muscle, that kind of thing. And that's just been going and I haven't been able to do anything. And over the last while, and as I'm talking to you now, I realized that I've just screwed up because I agreed we were going to go for a walk this morning. And now I'm talking to you so whoops, sorry about that. But I've been able to do some walking. I've been able to start doing some exercises because I was, you know, doing bed exercises. No, not just not those exercises. I actually had physiotherapist approved exercises, where I had to press my, my knees into the bed and I had to do this and I had to do that. And I was doing it and it was okay, but we've now progressed a little bit. So let's hope, let's hope that this is these are good signs, fingers crossed. If you are somebody that's battling with this, as I understand it, these kind of auto I mean, things seem to come for a lot of people in batches and the road to recovery and to understanding and to finding the right medication is a long one. So even though I'm upbeat now, I am aware that it might change. So just if you are going through it, hang in there, hang in there. And I know it's easy to say and that some stage I will talk about maybe if you are somebody that's living with somebody that has autoimmune issues, just the kind of strain you must be under as well. So we can, we can talk about that because I've talked about our kind of strain. But if you are living with an autoimmune disease, you're embarrassed about it and you haven't been able to talk about it or anything. I want to talk about it. Okay.

I want to talk about the stuff. I want to understand the stuff for this so much. I mean, it's like when I wake up at like three or four o'clock in the morning, my brain's fizzing with ideas. Unfortunately, the fizz is fizzed out by the time I get downstairs most of the time. But I want to talk about it. I want to learn. I want to hear your stories. I want to share stories. I want us to have a community where we can we can talk about the stuff and talk about what works and what doesn't work. I was watching a series with these guys and I injecting nanites into people and the nanites get programmed and I'm thinking I could do with some nanites for me, let's be honest. But what works for you? I've heard that there's a super foods that there's the vitamins smart, smart this's and that's in the next thing. I don't know. Okay, I'm a big fan of vitamins always have been. The doctor told me that all I do is make expensive urine. So, you know, what is your thought? Eat right? What do you do? Let me know like comment all of those things. And yeah, do do me a favor, please. Just hit that little like and the little bell thingy, you know, for for all the all the right reasons. And for those of you have watched and everything. Thank you, man. And I really mean it from the bottom of my heart and those of you have interacted. Thank you. It's a way for us to share and to get this out there and just talk about, you know, this this disease and mindset and how we can be nicer people when we have it. Because that's a whole nother story. Sometimes I am as grumpy as I'm very grumpy. So let's talk. Okay, like, share all of those things. Thank you so much and take care. Look after yourselves. Be kind and I'll chat to you again soon.