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How to be a patient Patient...?

Does anyone have any good tips for being stuck in the virtual waiting room that overlays many of our lives?

I called the hospital today to see if they had any cancellations but they don’t hold a cancellation list apparently. The secretary did check the other neurologists waiting lists for me but my existing appointment on the 31st October is the first one! It will be my second opinion appointment and I’m hoping that it will be able to shed some more light on what my body is up to at the moment!

I don’t want to wish my time away but I do want to get on with things. I’ll try to distract myself but everything takes so much effort at the moment. Littl’un has gone back to school and I’m enjoying the house to myself for a few hours.I’m easing myself back into my working routine slowly.As someone mentioned in another post, it is difficult living with the shadow of MS.

Hi reikiblossom,

It is sooooo difficult isn’t it? I have been on to the neuro secretary today, because I am suffering with horrid vertigo (again) which the GP says is neurological and needs to be sorted out by the neuro. The thing is, my ON started in Dec 13, I have seen the neuro once in March, and the rest of time has been either waiting for tests or for them to respond. When I rang the secretary today she said the doc has dictated a letter but that it hadn’t been typed yet - they were still typing the dictations from July 25th, and mine wasn’t dictated until 7th August!

I am trying to be patient but I am just about at the point when I request a copy of my notes and pay for a private consultant (not that we can afford it, but we’ll have to find it!).

aaaaaaaaarrrrrrrggggggggghhhhhhhhhh!!!

Leah :slight_smile:

Hi Leah, argh indeed! That timescale is just not on, is it? Do they need more secretaries?!? At what point do you complain to PALS? How long is it reasonable to wait for results and appointments?

I don’t have any tips, but I do understand the situation. I had an MRI in June which is indicating the possibility of MS. I had an appointment to see the neuro next week, but this was cancelled a couple of weeks ago with no offer of an alternative. When I rang to find out why, I was told that he was taking a ‘study day’. Knowing how stressful the waiting game is, I have come to the conclusion that I may be better off just discharging myself and ‘getting on with it’.

Considering we are all told to avoid stress, the NHS have no idea what they put people through.

Hope you survive the waiting game.

Zippy

I try to proactively pester (without pissing them off) for appointments etc… politely pushy with plenty of pregnant pauses.

But in between moments of harassing the seemingly chronically over worked, i indulge in some good old fashioned denial; assume all doctors are qwacks; that they are without a clue; they diagnose MS because it sounds better than saying “i have no idea” and that in fact, i have a mere virus that will fix itself and vanish as suddenly as it appeared.

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I finally got a call from the physio belonging to the CFS/ME group treatment team. The phonecall caught me by surprise and I found it hard to get my words out and I forgot to say what I was meaning to ask. I think she said that my therapy might finally be happening in October but I’m not sure. Thanks, cog-fog. At least I was able to say that I’m having physio and that I rely on hubby to drive me, unless easy to bus to.

I’m getting ready for a big fair this weekend. I hope my head is clearer when I’m on my market stall!

All fingers and toes crossed that the fog disappears for you and you can enjoy the stall!!

keep us posted on how it goes :slight_smile:

The letter came! Finally, dates for the CFS/ME group therapy (has anyone else done this?). I had a rollercoaster of emotions that morning as I realised that it was near impossible for me to get to and if I couldn’t, I might have to wait a year before another more local course.

Luckily, I managed to sort out transport and childcare, before confirming my place. October is going to be a busy month, with the first two sessions before my neuro appointment.We’re away this weekend and then I’ll be able to sit back and relax for the next few weeks. Thank goodness.