Forum

The endless wait for DMD

Good afternoon everyone, this is my first post.

I was officially diagnosed with RRMS in January 2013 after a long period of symptoms and subsequent tests.

After some initial trepidation, I decided in July 2015 to start a DMD.

Here I am now, still waiting for this to happen!! I haven’t read anywhere of this process taking so long.

I am in an endless cycle of Travel to London - See Neurologist - Blood Test - Wait 1 to 2 months - Mri - wait 4 to 6 months - See Neurologist again - no prescription - Blood Test - Wait 1 to 2 ------- You get the picture. I also have not yet seen an MS nurse.

There were new lesions on my spine on my last MRI.

My GP has tried to chase progress and get something moving, but it’s impossible!

Im starting to wonder if this is a case of medical negligence as all the time my MS is progressing without any treatment.

Has anyone else here waited a long time to get on to a DMD?

Thanks for listening.

two and a half years is a ridiculously long time to be waiting to start your drug.

phone them one more time and DEMAND some treatment.

if you have no response contact PALS Patient Advice and liaison.

carole x

ps for your extreme patience you may be put forward for a sainthood.

Thanks.

O’h my goodness Rigtech that sounds appalling. Something must be going seriously wrong there,you must be pulling your hair out! Have any of the professionals involved in your ‘care’ offered any explanation for this farce?

Where I live it is the ms nurse who sorts the DMD so maybe it’s getting an appointment with your local ms nurse you need. Also she has been a hero in sorting things when I get ‘stuck’. Like not being able to get through from holiday to order tablets, she resolved for me.

P.s. It was less than 2 months between my Dignoses & starting DMD.

Even my Neurologist has said “The system isn’t working properly”.

As well as the ridiculous waiting, the blood tests and MRI scan are not recent enough by the time I see the neurologist. When I last saw the neurologist he said “I will see you in six weeks”. I said to my wife that this would more likely be six months again. Unfortunately I was right. My last appointment was on July 18th and the appointment has come through for January 31st 2018!! The neurologist also says that he has to get approval due to the cost. The reason I have to travel to London is that he can only prescribe the DMD there due to cost as well. I am also being told that as the DMD will be prescribed in London, then I have to arrange an appointment with an MS nurse in London as well. Not that local.

How far do you have to travel to see the neurologist then? Is there not someone closer to home who you could see?

It sounds to me like it’s time you started complaining about your lack of treatment. Have you looked at the Patient Advice and Liaison Service of the hospital you attend? Try phoning them to see if they can help you with this endless round of test, wait, appointment, test, wait, etc.

Sue

I think you are right. I need to start complaining now. My normal appointment with the neurologist is at a hospital 10 miles from me. When I have seen him in London for “DMD” appointment, then that is 22 miles away. Thanks

It is pretty usual for it to take a few weeks/months between decision and first dose, and the wait feels like forever, however long or short it is. But over two YEARS? That is beyond a joke. Good luck getting it sorted, and the sooner the better.

Alison