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. The one takeaway: Being told for years that diabetes explained the pain and loss of sensation delayed the referral that finally produced a diagnosis.
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.
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