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Feeling a bit p***Ed off!

I had my relapse back in April/May & recovered through June & July. My gp was great referred me for iv steroids also an MRI so when I saw the consultant in aug he had all the relevant info ready to discuss DMD’s. But guess what… After a ton of phone calls I still haven’t had my MRI!!! Misplaced paperwork apparently! My consultant apt is on 11th Aug & the consultants sec told me she can’t get me in until September now! She was supposed to call me back earlier today with an apt or at least a cancellation slot, but yet again she has failed to do that, so i guess I’ll be phoning her again tomorrow. Grrrr!!!

Oh dear! The system is set to try us!

Best wishes for the outcome and hope make some progress tomorrow.

Jonathan

Keep onto the consultants secretary. lt seems they do have quite a lot of clout in organising their ‘bosses’. Listen to the sec’s name - and do use it when you contact him/her. Keep calm but firm/fair - so as not to arouse ‘tempers’. This has been a good method for me in the past.

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Still no luck! The secretary was supposed to call me back - well that hasn’t happened, but she did say she’d try and get me a cancellation. It’s just not fair. It’s not my fault my gp’s 1st referral for a MRI went missing and I’ve been in contact with my consultants secretary since June! Grrrr, does anyone know if I need to have an MRI before starting DMD’s? My consultants apt is on 11th Aug, so running out of time now. Eek!!!

I declined DMDs anyway, but that’s beside the point. I certainly wasn’t told I needed an(other) MRI before it could be discussed, but I did wait over nine months from diagnosis for my “eligibility assessment” - which included marching me up and down the hospital car park 'til I was exhausted, to check I could walk far enough to qualify!

They apparently had only one neuro who does these assessments (she wasn’t my regular neuro), and she went long-term sick on the very same morning I was to have had my appointment.

I very nearly had hat and coat on ready to go, when the phone rang to tell me it was cancelled. She didn’t have a replacement during her illness, and when she did come back after months, it was to a backlog, so I was eventually seen nine months later.

Just as well my decision (with the full support of my neuro) was: “Thanks, but no thanks”. If I’d been absolutely desperate to start them, a nine-month delay before even being assessed for basic suitability would have been absolutely unacceptable, in my view.

On the other hand, I did deduce from it that nobody could be seriously worried about me, if leaving it nine months was OK.

I don’t mean “not worried” in a callous way - I mean I took some reassurance from the fact nobody went ballistic over me not being assessed for nine months. They evidently thought I was safe and doing fine, and not much harm would come of it.

Tina

I didn’t have another MRI before being prescribed DMD’s. I did have a year’s wait though. The neuro who diagnosed me effectively discharged me (my GP said). But I had reported a violent spinning sensation (diminishing over days) to my nurse who said he’d try to get a neuro closer to where I live to see me. Then I went a few months later to check up on fatigue (no news of the neuro) but he thought MS was the best explanation. 3 months later I was seen by another neuro who DMT. So no new MRI though I had reported, essentially, a relapse (though mild - in the scheme of things.

MRI now booked for 15/08 & my Neuro is changing my appointment to 08/09 so he can evaluate my scan before seeing me. Just wished people didn’t ‘lose’ referrals from GP’s!

Thanks x He was aware I’d has a relapse as i went to hospital for iv steroids in May via my gp who spoke to him. She thought I’d had my MRI then. Such a shame people don’t communicate effectively!

Glad that seems to be in some order.

“wish people didn’t ‘lose’ referrals from GP’s!”

agreed!

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