Forum

Wait for DMDs???

Hi all

I have my neuro appt tomorrow morning and I’m just wondering what to expect. I was diagnosed privately, have had the DMD options explained to me and this is my first appt on the NHS. Can I expect to get started straight away or is there likely to be a wait? I was lucky to be diagnosed quickly as I’m not a patient person at the best of times!!!

Is there anything else they’re likely to want to do/check before I get started?

Thank you x

I won’t get my hopes up for tomorrow then lol!

The private neuro said I’d be eligible for DMDs as I’ve had two (possibly three) relapses in a short space of time - definitely two within a six month period. I’ve waited three months for this appointment (was diagnosed 14th April, although technically the diagnosis date has been backdated to when I had my MRI on 28th Feb!), so I’d kind of hoped to get started on something!

Thanks x

It does take a while to get DMDs sorted out. First you have to choose, then the MS nurse has to apply for funding from the PCT and sort out the details with the logistics company, then the neuro has to sign the prescription and get that sent to the logistics company (sounds easy, but can take a while!), then the nurse who teaches you about the injections has to book an appointment with you after you have your first delivery, and then finally(!) you can get started.

So, the moral of the story is choose asap and don't wait to be asked!

If I were you, I would tell the neuro tomorrow that the previous neuro explained the DMD options to you and that you would like to start on something as soon as possible, if that's OK with him/her. (If you've already chosen, then you could tell him/her which one you want.)

I hope it goes well.

Karen x

Thanks for that! I’m just re-reading everything now as I was thinking the exact same thing! I want to go in there and get things moving as soon as possible.

The good thing is that needles won’t be a problem for me as I went through three cycles of IVF a few years back (ended up with two natural pregnancies in the end!), and then injected myself with blood thinners every day of my two pregnancies! I feel like a bit of an expert in self-injecting!!!

Hi Emma,

I was diagnosed in April and am awaiting DMDs myself.  Seeing my new neuro on the 31st to get them signed off.

I was lucky as at my first MS nurse appointment my nurse gave me all the DMD packs to read through so I can make an informed decision... me being me... read EVERYTHING I could find and did OD on information but it meant I could make an informed choice. I even know the ph values! I've decided on Rebif manual injections.

Make sure you use www.msdecisions.co.uk it's fantastic- you can actually see people use the different injectors etc.  The sooner you decide what you want the sooner you can get the ball rolling.

If you (or anyone else) want to pick my brains just pm me, I'm happy to help and will give you unbiased information.

Sarah xxx

Thank you! Funnily enough I’d decided on Rebif as well, but having just seen my neuro I think I have a LONG wait ahead!

Despite being formally diagnosed privately (it was definite enough to get pay outs on my two critical illness insurance policies!) the NHS neuro wants to do everything again - that’s another MRI, full bloods, new chest X-ray (to rule out sarcoidosis) and is trying to persuade me to have a lumbar puncture!

I think this is a complete waste of time and money, but he won’t do anything until he’s had all these results. The only one I’m arguing with is the LP as I just don’t want to go through it and I know it’s not necessary. I’m all for being thorough, but this seems extreme. He even said I definitely fit the diagnostic criteria for MS now!

Oh well, more waiting, more tests, more frustration!

My personal experience is that the neurologist likes to have as clear a baseline picture as possible at the point of diagnosis and it sounds as thought this has not changed in the past 13 years! - as you say, it is good that they are thorough, even though something that looks like a trivial delay to them might feel like a big and unnecessary one to you. It was on this basis that I was persuaded to have a lumbar puncture, even though it was not strictly needed (it was absolutely fine, BTW) but I can’t see that they can quarrel with your perfectly reasonable decision to say ‘no thanks’ to that. If they turned back time, I would probably do the same.

Take a deep breath, and try to be patient. You are well down the road now.

Alison

x

Thank you! I am calming down a bit now, but I’m still not having a lumbar puncture (I refused to have an epidural during labour for my same squeamish reasons!). My biggest annoyance is that I’ve got to wait six weeks for the MRI - my insurance would pay for it to be done tomorrow but the consultant said no as he wants it done with their equipment!

Makes me think the insurance is pointless!