Progressive disease progresses, while I wait for test results

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This morning I couldn’t’ feel my feet at all. They were completely numb.  I got up at 4am and over time, feeling has started to return.  Now its 9:30am and I have partial feeling. I can feel things touching my feet, but the sensation is altered.  Not normal. 

That’s my usual feeling with my feet – I feel some things that touch me, but not all. And those I can feel are an altered sensation, sometimes less intense, sometimes excruciatingly painful. This is due to peripheral nerve damage, so I’m told.

But today was worse.  Not feeling my feet at all is a sign of disease progression.

For the last week I have had a lot of difficulty lifting my legs.  When I walk, my feet drag, unless I actively focus on *lifting* my legs.  My legs feel so heavy, like lead.  It makes walking quite exhausting, although I am still trying to walk my dogs.  I cannot take all three, but I can take one, maybe two.  I cannot go every day, but I aim for every second day. 

I believe strongly in ‘use it or lose it’ but I have to accept that exercise can very easily make me worse. Can make my legs heavier, more painful, less functional. It’s a very hard balance to achieve – enough exercise to challenge me, but not so much as to cause a flare of pain and heaviness in my legs.  And a few days in couch jail.

My disease is progressing. I am getting worse. I am becoming more disabled. I am losing the ability to walk. 

And I am still waiting for treatment.

Waiting for help. My neurologist has had second thoughts, presumably because he discussed my case with his colleague.   I consulted his colleague a few years ago, and he diagnosed a ‘functional’ disorder. Meaning there was nothing physically wrong with me. No organic disease, no pathology. 

‘Functional’ neurological disease can mean everything from “it’s like having a software problem, the hardware (your brain and nervous system) are all fine. But the software isn’t working properly” to “it’s all in your head, go see a psychologist”.

It was a short, five-minute consult. He had made up his mind before he even met me, based on my demographics and the referral. 

And now I believe he’s influencing my new neurologist, who was sure it was CIDP on the first consult, having reviewed my old data.

In fact, my old spinal tap is my saving grace. It clearly shows very elevated protein, which means there IS something organic going on. It is not functional.

But now, looking at the tests he’s ordered, he’s considering multiple myeloma, which many doctors have considered before him.  But what’s new is some testing for amyloidosis.

I’m not sure if anyone has ever considered that. 

I read the symptoms, and it does potentially fit. Its not a bad idea.  Its just that these tests take about two weeks for the results.  And then they need to be sent back and sent, via post, to me. So it will be at least 3 weeks until I know the results.  And then longer until I can get an appointment with my neurologist.

And in the meantime, I am losing feeling in my feet.  I am losing the ability to lift my legs.

Understand? 

I know getting a correct diagnosis is essential. The treatment for CIDP and the treatment for amyloidosis are different. 

But it feels like disease progression is happening while we are pfaffing about getting more tests.  Most of these tests I’ve had before, with the exception of the amyloidosis stuff.

I want to tell him it will all come back normal.  I want to beg him to fast-track these tests.

Is there even a way to fast track?  I doubt it.  Tests take the time they take.  Even if there were, this is not an emergency. I am not dying. I am just losing feeling in my feet, becoming more disabled. Becoming sicker.

It feels like doctors forget this, sometimes.  They seem to forget how much time matters, and that I am living with very unpleasant symptoms and a lot of pain. 

He could have gone ahead and organised those muscle and nerve biopsies that he keeps talking about.  It has been six months since I first saw him now, I don’t see the harm in doing the biopsy. It’s a day procedure in hospital.  Now he has delayed them again, because he wants these test results first.

Logic tells me that he is a good doctor, he is being thorough.  Careful. Its clear that I am very unwell, and he is not walking away, like all my other doctors have.   It felt like he wasted three months contemplating, and consulting, but he wasn’t.  I am grateful for his thoroughness.  But I feel like my previous tests results show significant immune system dysfunction. There doesn’t seem to be a lot of harm in just trying the IVIG.

But that’s not how medicine works.  Medicine is slow.  Testing is slow.  I know it has to be so. I know my wish to just throw IVIG at it, and do the damn biopsies is wrong. Potentially very wasteful.  But its hard to wait, while I feel myself losing strength in my legs. 

My neurologist is a wonderful doctor. He consults on Saturdays, so as to service all his patients in a reasonable time.  I don’t know ANY other specialist doctor who works on Saturdays to catch up on his patient list.  He is undoubtably committed to patient care.  He cares.

But it will be a month before I have these results.  And my next appointment with him is not until December, and I was very lucky to get that appointment.   Someone cancelled while I was standing there, and the receptionist gave the appointment to me. Otherwise it would have been late January, 2024.

I know I have a great doctor who is doing all the right things.

Its just very hard to wait. 

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