The Unfolding Journey of Chronic Illness and Diagnosis: A Personal Experience with CIDP
In short
David Watts continues the account of his last three years, moving from being told diabetes explained his foot pain and lost sensation to a neurologist's nerve conduction test, a CT scan and a seated lumbar puncture. The results brought two findings at once: CIDP, an autoimmune attack on the myelin around his nerves, and a left hip with no blood flow that needs replacing.
Why was he sent to a neurologist when the problem was pain in his feet?
Because after repeatedly being told his diabetes was causing the pain and loss of sensation, he was referred on. He admits he had no idea a neurologist was involved in what he saw as foot pain. That referral led him to the woman who became his neurologist, whom he describes as focused, driven and with a mind like a steel trap.
What is a nerve conduction test like, and what did it show?
Electrodes are placed on the legs, feet and arms and a current is sent through them, mildly uncomfortable at first but leaving him flopping on the table like a fish out of water by the last two. The neurologist told him his conductivity was way slow, with signs of damage in both his legs and his arms.
What tests were ordered after the nerve conduction results?
A CT scan and a lumbar puncture. He assumed lumbar punctures belonged to days gone by, were painful and unpleasant, and that patients would generally be sedated for them. Both procedures were done during the same hospital visit.
Who is Helena and what part does she play in this?
She is his fiancée, best friend and companion, the person who puts up with all his nonsense, and he says he cannot describe her as anything less than his everything. She also acts as his memory, coming to appointments and remembering what he does not, which mattered when the diagnosis was explained.
Was he put to sleep for the lumbar puncture?
No. He was asked to sit on the edge of the bed and lean over a pillow while the assistant leaned on him and pushed him down. A local anaesthetic went into his back, the neurologist did the puncture there and then, and he was told to lie still for nine hours afterwards.
What did he find hardest about the process?
The waiting and the not knowing, which he calls the worst part of these autoimmune conditions and something that has happened to him several times. He also notes that lying still for nine hours is a particular problem for someone with ADD, though the headache encouraged him to comply.
What is CIDP and how was it explained to him?
CIDP stands for chronic inflammatory demyelinating polyneuropathy, and it was broken down using an electric cable analogy: insulation surrounds live wires, and without insulation the wires touch and short out. His body is attacking the myelin sheath around his nerves and eating it away, so the nerves short-circuit. He first learnt of it by email.
What was the second, unexpected finding?
The CT scan showed a problem with his left hip, described to him as idiopathic something or other, essentially no blood flow reaching the hip. He was told it will get worse and could crumble, so he needs a hip replacement. He went away to digest it, adding that this is not even the end of the beginning.
In their words
And I think with these kind of autoimmune things, that's the worst part, is the waiting and the not knowing.
If you think of electric cable, okay, there's insulation around it, the live wires go through it, and if there's no insulation, the wires touch, it shorts out.
So, essentially, what's happening is my body is attacking the myelin sheath around my nerves, eating it away.
And sitting there, she did the lumbar puncture, and then told me I had to lie still for 9 hours.
she's also my brains a lot of the time where she remembers stuff that I don't
Key takeaways
- Being told for years that diabetes explained the pain and loss of sensation delayed the referral that finally produced a diagnosis.
- A nerve conduction test showed markedly slow conductivity and signs of nerve damage in both legs and arms.
- The lumbar puncture was done sitting up under local anaesthetic rather than under sedation, followed by nine hours lying still.
- CIDP means the body attacks the myelin sheath around the nerves, so the nerves short-circuit like a cable stripped of insulation.
- The same CT scan turned up a second problem, a left hip with no blood flow that will need replacing.
- David names the waiting and not knowing, rather than the procedures themselves, as the worst part of an autoimmune diagnosis.
Show notes
Welcome to Episode 247 of "Watts Involved"! In this episode, we dive into the personal journey of host David Watts as he shares the latest developments in his life. From discussions with a neurologist to unexpected diagnoses and medical procedures, David reveals the challenges he's faced, including a new diagnosis of CIDP and a hip issue requiring a replacement. Join us as we unpack these unexpected twists and gain insight into David's ongoing journey. Stay tuned for more heartfelt and compelling stories in the next instalment. Thanks for tuning in to "Watts Involved"!
Frequently asked questions
How did he first learn he had CIDP?
By email. His neurologist wrote telling him to come in, that he had CIDP and that there was something else she would prefer to discuss in person, which left him sitting in horror wondering what could be worse.did could be worse.
Did he know what CIDP was when he was told?
No. He had never heard of it in his life before and had to have it broken down into simpler terms, which is when the electric cable analogy was used to explain the damage to his nerves.
Why did he manage to lie still for nine hours?
The headache encouraged him. He points out that staying still that long is a real difficulty for someone with ADD, but the after-effects of the lumbar puncture made it easier to comply.
Is this the full story of his diagnosis?
No. He closes by saying that is not even the end of the story so far, and he is not sure it is even the end of the beginning, promising to continue in the next instalment.
Transcript
David Watts — Well, once again, we say, welcome to another episode of what's involved. This part where this watch gets involved with his own life, I guess, is the best way to describe it. So this for those of you who may have missed the first episode in this whole change up that I've done, go back and watch it now. Okay? Bye. Just kidding. It'll be nice if you do. But, I'm discussing what's happened in in my life over the last, 3 odd years and, what has led me to where I am today. So last episode and I did I did mention brain fog and and word salad and all of those things.
David Watts — So the last episode, if I remember correctly, we ended off saying and talking about the diabetes and, you know, how I kept getting told it was that that was was causing all my pain and loss of sensation, etcetera, etcetera, etcetera. And then, we discussed going and getting referred to a neurologist. So I was like, okay. I never knew you had to see a neurologist for, for for foot pain, essentially. Anyway, off I went and and had a chat to this neurologist, who has subsequently become my neurologist, one of the most focused, driven women I have ever met in my life, and mind like a steel trap. She doesn't forget anything ever. Anyway, so she said to me when we got there, I had to fill out a whole sort of forms and all sorts of things, and then they did a nerve conduction test. So, essentially, what that is, on your your feet and your legs and everything, they place electrodes, and then they send a current through the electrodes, which in the beginning is mildly uncomfortable.
David Watts — But when it comes to the last 2 in particular, it kind of leaves you flopping around on the table like a sort of fish out of water. Anyway, they did that, and they did that on my arms as well. And she said to me, oh, that's not good. Your whatever conductivity is, like, way slow. It's sounds of damage in in both your legs and your arms. And I was like, okay. So now what? And she then said, okay. Well, the next thing we have to do is, we've gotta do a couple of tests.
David Watts — I've got to do a CT scan, and we then have to do a lumbar puncture. So I said, okay. Now in my head, lumbar punctures were something, like, from days gone by that was painful and unpleasant, and they kind of genuinely generally sort of, you know, in my opinion, they would, like, sedate you. So time comes and we go to hospital. I'd asked Helena. You're gonna hear a lot about Helena, so pay attention. She is my everything. I don't know how else to describe her.
David Watts — She is my fiance. She's my best friend, my companion, somebody who puts up with all of my nonsense. So I said to her, what do you think this lumbar puncture thing is gonna be like? And she said to me, no. It's you're gonna just go into hospital. They're gonna put you out. While you sleep, they're gonna do this. And I was okay. So and I went, and the next second, the neurologist arrived with her assistant.
David Watts — She said to me, please sit on the edge of the bed, and I did. And she said, okay. Please lean over now, And then she gave me a pillow, and I thought, okay. Well, she's she's just maybe checking and marking where she needs to do this. Then she says to her assistant, please lean on him and push him down. And I'm like, what is going on here? Needless to say, before I knew it, 123, I'd had a local anesthetic injected into my back. And sitting there, she did the lumbar puncture, and then told me I had to lie still for 9 hours. Yeah.
David Watts — Somebody with ADD lying still for 9 hours. Mhmm. Yeah. Well, the headache encouraged me. At the same time, they did the CT scan and off we went. You know, I was then waiting and waiting. And I think with these kind of autoimmune things, that's the worst part, is the waiting and the not knowing. And it's happened to me several times, this waiting and not knowing.
David Watts — Anyway, so then off she went, off I went, and I got an email from her saying, I think you better come in and see me. You have CIDP and something else that I'd prefer to discuss in person. And I was like, I have a what? Because I had no idea what it was. Never heard of it in my life before. Anyway, took Helena with because not only, as I said, is she my everything, she's also my brains a lot of the time where she remembers stuff that I don't. And off we went, and we sat in her office, and I I'll never forget this. And we said, okay. What is what is this diagnosis? What is what is going on here? It's like, it's called CIDP, which stands for let's see if we can get this right.
David Watts — Chronic inflammatory demyelinating polyneuropathy. In other words, and then they had to break it down into simpler things for me to understand. If you think of electric cable, okay, there's insulation around it, the live wires go through it, And if there's no insulation, the wires touch, it shorts out. So, essentially, what's happening is my body is attacking the myelin sheath around my nerves, eating it away. All the nerves are short circ oh, excuse me, short circuiting. And I was like, and you told me this via email? So now I'm sitting there in horror wondering what the hell is she gonna tell me that she couldn't tell me, an email. I mean, she can drop a bomb like that. So she goes, oh, and then the other thing is in the CT scan, we have found out that, you've got a problem with your left hip.
David Watts — And I was like, okay. She goes, yes. You've got what is it? Idiopathic something or other. Essentially, no blood flow coming into my hip. So I said to her, what does that mean? She says, well, it means it's gonna get worse and worse and worse, and it it could crumble or whatever, so you need a hip replacement. So off I went to digest that. But now here's the thing, that's not even the end of the story so far. I'm not sure it's even the end of the beginning.
David Watts — So, we'll chat some more the next time. To each and every one of you, look after yourselves. Be kind. Thank you for joining me.
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