9 min

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

AutoimmuneHealth

In short

David Watts gives a short personal health update: blood tests after his hospital stay first pointed to stiff person syndrome, then to myasthenia gravis on top of CIDP. A week into two new medications, cramps and pain have eased, and a CPAP machine for sleep apnoea appears to be helping. He asks listeners with autoimmune conditions to share what works.

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What did David's blood tests after hospital actually show?

A raft of blood tests followed his inconclusive polymyositis investigation, and the neurologist and rheumatologist first suggested SPS — stiff person syndrome. That was then ruled out. Their current thinking is myasthenia gravis, which he describes as muscle weakness and wasting, on top of the CIDP he already has.

What did he think SPS meant when he first heard it?

A type of hard coral. Having kept marine tanks, SPS to him was a coral classification, not a medical term, so learning it stood for stiff person syndrome came as a surprise. He jokes that he probably has stiffness in none of the right places.

Are the new medications working?

After about a week he is cautiously optimistic. The muscle-ripping cramps are considerably reduced and the pain has come down to what he calls a pleasant, manageable three out of ten. He does not know the names of the two new medications he has been given.

What difference has the CPAP machine made?

It appears to be the biggest single change. Before it, he was waking up around 47 times an hour, with periods of not breathing for almost 90 seconds and blood oxygen dropping to roughly 70 to 72. He was told to aim for six to eight hours a night with the mask on.

What is it like to actually sleep with a CPAP mask?

Awkward at first — he kept pulling it off in the night and putting it back on when he woke, though that is improving. He jokes he is not the most attractive person to sleep next to. The machine itself is silent unless it unplugs or there is a gap round the mask.

How has his physical strength changed, and what can he do now?

He used to be fit, strong and fairly muscular in a martial-arts way — fast-twitch rather than bodybuilder muscle — and that has been draining away. Recently he has managed some walking and progressed beyond physiotherapist-approved bed exercises, such as pressing his knees into the mattress.

Does he expect to keep feeling this positive?

No, and he says so plainly. His understanding is that autoimmune problems arrive in batches for many people and that the road to recovery, understanding and finding the right medication is long. He is upbeat now but aware it may change, and tells others going through it to hang in there.

What does he want from listeners?

Stories and practical experience. He wants a community where people with autoimmune disease can talk about what works and what does not — superfoods, vitamins, diet — especially anyone too embarrassed to have spoken about it before. He also plans a future conversation about the strain on people living with someone who has autoimmune issues.

In their words

Taken from the recording, word for word.

SPS was a form of hard coral. Little did I know that SPS actually stands for stiff person syndrome.

— David Watts

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.

— David Watts

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.

— David Watts

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.

— David Watts

Key takeaways

  1. A working diagnosis can shift more than once — from inconclusive polymyositis, to suspected stiff person syndrome, to myasthenia gravis alongside CIDP.
  2. Treating sleep apnoea with CPAP may be the change with the largest effect, given how severely his breathing and blood oxygen were disrupted.
  3. A week of new medication has reduced cramps and brought pain down to a manageable three out of ten.
  4. Progress is incremental: bed-based physiotherapy exercises first, then walking, after a long period of being unable to do anything.
  5. Being upbeat and expecting setbacks are not contradictory — autoimmune conditions come in batches and finding the right treatment takes time.
  6. Talking openly about autoimmune illness, including the grumpiness and the mindset side, matters as much as the medical detail.

Show notes

Welcome back to another intriguing episode of Watts Involved. Today, our host, David Watts, shares a deeply personal account of his recent health challenges, ranging from an inconclusive diagnosis of (SPS) Stiff Person Syndrome to landing a potential diagnosis of myasthenia gravis, alongside experiences with (CIDP) Chronic Inflammatory Demyelinating Polyneuropathy and sleep apnea. In this episode, David delves into the lifestyle adjustments he’s had to make, including starting new medications and using a CPAP machine to improve his sleep quality. Reflecting candidly on the emotional and physical toll of these conditions, David also sparks a broader conversation about living with and managing autoimmune diseases. Join us as David encourages community interaction, inviting listeners to share their stories and coping mechanisms, all while keeping spirits high and fostering understanding and support among those affected. Tune in to hear more about David's journey, learn about the impact of these health issues, and perhaps find camaraderie or comfort in the shared experiences of our listening community.

Frequently asked questions

What is CIDP in this context?

David refers to CIDP as a condition he already lives with, and the suspected myasthenia gravis is described as being on top of it. He does not explain the condition further in this update.

Does he know what medication he is taking?

No. He was given two new forms of medication and says he does not know their names, just as he could not say what the earlier blood tests were checking for.

What does he say about vitamins?

He has always been a big fan of vitamins, though a doctor told him all he was doing was making expensive urine. He asks listeners what they take and what actually works for them.

What did he say about a scar from hospital?

He has a gash and now a scar on his leg from the earlier investigation, which he jokes lets him invent all sorts of war stories.

Transcript

The full conversation, 1,370 words.

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.

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