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Newly Diagnosed - lost

Hi All,

After a 9 year battle I was diagnosed with MS. MRI and lumbar puncture results meant they could no longer argue it was all in my head.

The neurologist phoned to give me the diagnoses and I feel totally lost. I asked about DMD and was told up here (Highland) they do not introduce them at diagnosis. They would only give if there is active demyelination or disabling relapses (my last disabling relapse was 2013). They can’t tell if I have active demyelination as my MRI was non contests. Is this normal with DMD or should they be at least considered at point of diagnosis?

i was told she would review me. I asked when, not expecting a date etc but a rough guide of how long I’d have to wait. She could give an idea of time and simply said “it shouldn’t be a year”. She said she MAY consider a repeat MRI with contrast at some point.

I asked about prognosis and was told “we can’t tell if it is bad or not yet but there are a couple of lesions on the brain and neck”. I know prognosis is difficult with MS but surely she could have given a bit more based on the MRI and my clinical presentation etc???

Hello

Welcome to the forum. I’m sorry that you’ve had to find your way here.

The problem with prescribing DMDs is that the NICE guideline is that you have relapsing remitting MS (as opposed to secondary or primary progressive MS), and that you’ve had at least 2 clinically significant relapses in the last two years. If your last major relapse was in 2013, the neurologist won’t be able to prescribe DMDs at the present time.

You are right that an MRI with contrast would show up current inflammatory action, but the reason you weren’t given an MRI with contrast could be because you’ve not been having serious relapses.

Have you been given the contact details of an MS nurse? Hopefully you have, if not, try asking the secretary of your neurologist. You could talk all this out with him/her.

If in the meantime, you do have a major relapse, I should both phone the neurologists secretary and write to the neurologist simultaneously. If it’s a big disabling relapse, then just go to A&E.

Best of luck. Please keep talking to us on the forum, it can be a lonely and emotional time having a diagnosis of MS. If you also have feelings of anger about the way your diagnosis has been handled, it’s going to take some getting your head sorted.

Sue

Hi Sue,

Thanks for your reply and advice.

Not sure where my head is just now. More upset than anger. It took almost nine years to investigate things properly, with no investigation they diagnosed Guillain Barre Syndrome in 2013. They’ve now confirmed that wasn’t the case it was in fact a significant MS relapse. The only reason I got the MRI in the first place towards the end of last year was; “I’ll send you for an MRI as you are staff and to prove it’s in your head”.

I was given the results over the phone on Monday, the neurologist said she’d have to talk to MS nurses as she wasn’t sure if it would be appropriate to refer me to them cause we share pts/work together at times!!! She was sorry it had taken 2 months to get the lumbar puncture results to me.

To date I have little confidence in neurology, I am sure others here have had positive experiences with them but I haven’t!

To be honest, I wouldn’t have too much faith in your hospital / employer either.

It sounds as though you’ve been dealt a crappy hand, so I’m not at all surprised you’re upset. And if all patients have the right to an MS nurse, how is it that far from getting better treatment because you’re staff, you get a worse service.

2 months for LP results? Proof that it’s in your head? Diagnosed over the phone? Is it possible to complain to someone? Anyone? About the abysmal way you’ve been treated? If you weren’t staff, what would you advise a patient to do? Refer to PALS at least!

I wonder how far it is from the next hospital to yours? Whether it’s possible to be referred for neurology / MS nurses to a different trust? So that you aren’t being treated by colleagues?

I’m actually angry on your behalf. I hadn’t realised from your original post that you are actually a healthcare professional and work at the hospital where you’re also a patient.

I just think that everyone deserves courtesy and respect and don’t really feel like you’ve had much of either.

Sue

My GP has been excellent in supporting me and I have an appt with her next week. Basically to look at all the questions I have and she will then write to Neuro asking for the answers and to detail that the way things have been handled isn’t ok.

when I see my GP I am going to ask about being referred to another hospital, unfortunately the next nearest hospital is about 200 miles away in Glasgow. However, I feel it would be worth the travel at this stage.

I feel a bit stupid as I’ve known for a long time what the outcome would eventually be but since getting the phone call on Monday I’ve been an emotional wreck!