About ALS, eye pain and short-sighted diagnoses
The Sunday question(s). In conversation with my sister. Sandra is my eye doctor. The fifth past interview, recorded on Monday, 24 February 2024.
Katrin: How is the eye actually doing?
Should I send the ophthalmologist a current photo?
PatrickYesterday was not good. Today better again.
Katrin: Can you pinpoint the reason why it is worse?
Work a lot on the PC?
Mucus, secretion?
Slept longer or shorter?
Change of bed?
For example, a lot of dust is stirred up.
PatrickYes, but it was already bad when I woke up. Zero PC work. Normal bad and short sleep. Mucus yes.
KatrinIs there less mucus/secretion today than yesterday?
Patrick: Maybe. Hard to say. I'll have a look through my notes from writing.
I've actually had it for much longer. My doctor didn't want to take a swab or do any further tests because that wouldn't change the treatment with antibiotics. Even Luisa had said that he should take a smear test.
KatrinOh my! Since when is Luisa no longer with you?
I seem to remember that I first noticed last summer that your eyes were red and that you mentioned sensitivity to light.
PatrickSince October officially, but actually already at the end of August.
Yes, that reminds me that I didn't take any Fenta. Only every five to seven days for treatment and often without the spray because we thought the granuloma was gone and the spray wasn't available for months.
Someone was wrong to claim that fentanyl is to blame for everything and that withdrawal is the only thing that matters. There are things.
I have a simple theory,
which would confirm Sandra's assumption that the cause of the pain is dry eyes.
KatrinTheory = Sandra's assumption = dry eyes?
Yes, that would also be fully understandable → because the eyes are less moisturised if you blink less often. And you don't close your eyes completely at night either, do you?
This will certainly also dry out the skin.
The corneal tear and conjunctivitis were all on top of that.
PatrickWhy is it always the right eye? It's always the right eye that hurts, that turns red, that produces so much secretion - over and over again. The left eye can sometimes become inflamed, but it's actually always the right eye that hurts so badly. For at least half a year, if not longer.
It was always dismissed as:
- Unhygienic work
- Saliva got into the eye
- Not paying attention during care
- Simply sensitive eyes
- Bad luck
Those were my theories.
And of course my doctor's theories:
- Too much PC work
- Too much PC work
- And even though I hadn't even written "cough" for four weeks: too much PC work.
And finally the absurd theory that Fenta was causing all the symptoms or that I was just imagining it all because of my "massive fentanyl addiction".
I think that's all rubbish.
Why only the right eye?
I think the solution is so simple that we didn't think of it ...
I've thought about it a lot and often.
I came up with the following idea by chance yesterday:
As usual, I couldn't fall asleep the night before last since my last visit to the doctor.
I still think about how he treated me every night. Totally barmy.
Around 4am I had a Zolpidem [strong sleep aid that I get on top of my actual daily sleep aid if needed] given to me, but still woke up at some point when I was laid up and was quite drowsy and slow from Zolpidem.
I realised that - before I consciously opened both eyes - my right eye was already open. I tried to close the eye, but the eyelid was tense and I couldn't close it.
And again it was the right eye ...
Katrin: Does this mean that the right eye is open longer and more often than the left?
Patrick"Tell me, can you remember when I have my eyes open at night - are they both equally wide open or is one more or less open?"
I asked my carers this question and heard:
"Actually, the right eye is always wider open."
Cramped muscle, impaired motor function, muscular dystrophy, contracture ...
This is ALS, and in my case it spreads from the bottom right to the top left.
That was the case with the toes, the legs, then the hands, the arms, the cheek muscles, the lips.
I can close my lips on the left, but not on the right.
When my head is on the left, no saliva runs out of my mouth.
You turn my head to the right and twenty minutes later I'm swimming.
And now it's the eyes' turn.
In three months I will have the same problem with my left eye.
KatrinHa! That sounds plausible.
Will you send this to Sandra too?
So that the right eye continues to be treated accordingly and the left eye is prevented?
PatrickThere's not much you can do.
When the carer closes the eye with a finger, it opens again after a few minutes.
My carers are allowed to observe and document whether this is really the way I think it is.
They kill me when I tell them that they have to maintain one more documentation ...
You can find the background to this and how the idea came about in this article here: The past interview experiment. Always on Sundays.
Names have been changed.
