Those cracks are mighty big!!!

Whenever I interact with our beloved healthcare system I worry about falling through the cracks. I work in it and I know what happens at the end of clinics - the consultant has a big pile of notes to dictate letters for and depending on the consultant/Reg they can be done instantly or sit around for a week with a label on them saying 'X's dictation pile'.

My experience in the Eye Clinic and on the Eye ward reinforced my paranoia! So I've been concerned about my referral to neuro.  I got no discharge letter, which is a handy dandy heads up! I thought I'd give them a week and then, well then I didn't really know what I'd do!


So a week rolled by and my self imposed kickass time limit ran out! By googling a bit I found two things - an Ask the doc column on the Neurology Trust website and an email address for the MS nurses at Auckland. So I flicked off an email to both, not expecting much.  Basically I asked the nurses how long should I expect to wait for a referral.


Well this morning this was in my box (Names changed to protect the great!) - it shows paranoia sometimes isn't paranoia!

Hi Nic,

I'm pleased you got in contact -X, who you emailed no longer works here but the email was fwded on to me which is great.

I've not found your discharge summary on the system but will call Dr Y or Z's team at Greenlane eye clinic and chase up your neurology referral. Ideally it would be best to pop you into an appointment asap so will try and arrange for you.

Will let you know how I get on. How is your optic neuritis now after the steroids?

Kind Regards

Super Angel

So now I feel a little less blind (apart from the neuritis, which makes me slightly vision impaired!). So now I await her reply. 

I've also sent a request to Clinical records for my notes while under the care of Eye Clinic. May or may not be interesting reading!

It just appalls me the way people can just fall through the cracks! Sometimes it works to your advantage - when I had a scratched cornea I left clinic after waiting 2 hours for my probably last follow up appointment because that is just too long and never got a new appointment - probably because I'd checked in so technically attended.

So lets see how the wheels move now.

Chinese whispers

I'm taking part in a drug trial currently. It's looking at whether the addition of some compound or other to Detrusitol will reduce the side effect of dry mouth. I've had to take Detrusitol for 6 weeks to see if I get the dry mouth - I do, oh boy do I! When I first got the symptoms of optic neuritis I wondered if it was a side effect of the Detrusitol - if it dries your mouth out, surely it might dry your eyes out too.  Seems it wasn't to blame.

Today I went in to be randomized for the next step - blind testing where you have 4 weeks on Detrusitol, 4 weeks on placebo and 4 weeks on the new drug. When I was hospitalized I contacted them to let them know so today was also a bit of a follow up to that. I'm now getting used to the looks on people's faces when you say I have optic neuritis and lesions on my MRI. I often want to slap them because you know they're thinking "MS!" but of course don't want to say it. For goodness sake I'm a health professional with an iPhone!

They asked if I'd brought in my discharge letter - I laughed! What discharge letter! It was 'goodbye and thanks for all the fish!". All I could do was relay that when I asked about the MRI I was a told there were plaques. "Plaques are lesions, right?" I had to tell the I had no idea when I'd have an appointment with the neurology team.  Now things could have ground to a halt there but no! The doc rings radiology and asks what my MRI showed - multiple lesions.  He then tried to get hold of a neurologist but no one was answering his calls. So he gave me a diagnosis of probable MS but of course can't confirm and we decided there is no reason to not continue the trial since it won't exacerbate 'my MS' - hits home when it's described as something belonging to you!

Not my MRI, just an example!

He also thinks it'll probably be 10-12 weeks before I get an appointment so the study will be done and dusted by then anyway.  Of course if I go private then I'll put a spanner in the works but we'll see. So I've got a differential diagnosis based on Chinese whispers! Oh how I love the health system! I'm really over it! Just another area that is on my list to fix when I rule the world.

Not a good day

I'm not feeling 'good' today. I feel as though I'm in a vat of congealed fat. It's hard to move. I took the dog for a walk and I was thinking about the tables they use to determine how bad someone's MS is (I'm reading a lot!) and they talk about how far you can walk without resting or using a support etc. I got to the turn in the driveway and thought 'I want to stop here' so that would be 200m but I didn't. In a marathon you think 'I want to stop here' frequently but you tell yourself to stop whining and carry on. And so I carried on. So I can walk for a reasonable distance without support or resting because my head is trained to make me do so. It'd be like someone lost in a desert - you make yourself go on. If someone said "How far can you walk?" my answer would be "How far do I have to walk?". So how accurate are the tables? Would a more accurate assessment be "When do you first feel the need to stop walking?"

I am exhausted. I had to have a nap between dropping Toby at school and going to work. I fell after my last visit - foot drop. The idea of going down the stairs to dinner was like asking me to walk to the city centre. It's the worst fatigue I've ever had. It's probably the insomnia finally impacting! Only half a prednisone tablet left to take tomorrow and then I'm steroid free! For me the side effects have outweighed the benefits. I still have blurred vision and weakness after 3 weeks of treatment and I'm grumpy, sleep deprived and moon faced to boot.  I think I'd only ever take a repeat dose if it was the choice between steroids and an MRI. An MRI is pretty close to the top of things I never want to do again without medicinal aid. I'm pretty sure I will be faced with a repeat in the not too distant future.  I may try going private to avoid the technician who trusses you up like a hostage victim. For goodness sakes guy! breathing is not optional!

I'm awaiting a referral but have no indication of when it might appear. The collective conscious have all decided that if I don't hear by Friday I am to go to my GP and get a private referral from her.  It would be nice if things just went they way they are supposed to.  I once described depression to a woman as the statement  'I can't be bothered', how I feel at the moment is similar but I had a much better term until my brain went squelch and all higher levels of functioning stopped. It's more I'm powerless to be bothered. I have way too many things to be doing to be feeling like this!