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Fell Through The Cracks

So a few weeks ago I woke up with numb/tingly legs. Partner dragged me to a&e where they decided to keep me in, after many discussions with many different doctors (telling all of them my history of optic neuritis and that I see the neurologist every 6 months or so) they sent me for an mri and let me go home the next morning. When they discharged me they told me that it did seem like MS, someone would phone me with my MRI results and then a neurologist would be in touch if there was any evidence.

About a week later I had horrible back pain so back to A&E I was dragged. The woman I saw there checked for my MRI results, told me there were 3 new lesions so she would email the neurologist, took my phone number told me the neurologist would be in touch.

A couple of days after that someone from Ambulatory phoned me to explain my results, said that my case has been passed to neurology, the neurologist would be in touch after his weekly meeting with radiology.

Two weeks later still not heard anything so I phoned the MS nurse, explained everything she said she would chase it up. She phoned me back yesterday to ask me who had told me I would be hearing from the neurologist, I told her pretty much everyone I’ve spoken to since my first visit to a&e, including the gp that I’ve seen 3 times since (I’ve been off work since all this started) The MS nurse tells me that no one had transferred my case to neurology, they had no idea I was waiting for them, I should get a call or letter end of next week/early the week after.

I fell through the cracks and now I feel like an idiot, waiting to hear from someone that had no idea I was waiting.

Thank you for taking the time to read my rant.

Aw Trixie, no wonder you want a good rant and a moan.

It’s crappy hearing that you’ve got lesions. Knowing that the neurologist has already suggested that it’s MS, and yet no one even has your case on their radar is even worse.

It’s definitely time for a bloody good whinge and whine. And a bit of shouting ‘it’s not fair’ too!!

You have all my sympathy.

Let us know what comes of it. Ultimately you could complain to the hospitals PALS team (Patient Advice and Liaison Service).

Sue

I must admit having a vent did help a little. Now I’m back to square one of waiting again.

Vent away. You’re free to scream and shout as well if you like. Sue

Argh,someone tried to phone me this morning but I slept through it. The only contact information I have is the MS nurse and I really don’t want to pester her. I’m hoping they try again this afternoon.

I fell through the cracks also waiting 4 months on the results of my mri seems to be really difficult at the minute to get appointments with neurology

Got my letter this morning, I have an appointment on the 11th

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Good. Let us know what happens. See if you can get someone to go with you to the appointment, there’s nothing worse than looking forward anxiously to an appointment, then walking out the door, scratching your head and wondering ‘what the hell just got said!!’

Sue

Thankfully my partner always comes with me to my appointments as a second set of ears and to help with the questions.

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I got my diagnosis today. Just got back from the neurologist. I knew what was coming when he called the MS nurse to join us. He showed me my scans and explained what was found. Explained that since I’m getting better on my own they wont give me steroids this time, but I know what to look for and next time they can treat me straight away. Next job is to make an appointment with the MS nurse to go over what happens next.

So it’s relapsing remitting MS then Trixie? So I assume your appointment with the MS nurse will be to discuss disease modifying drugs (DMDs)?

Have you had a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It gives information about all the different DMDs. You probably won’t have the free choice of all of them, it will depend on the local prescribing situation as well as how active your MS is. But it might help to have a bit of an overview of them so it’s not all new to you.

Also theres https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

There’s tons of information on the MS Trust pages.

I hope you and your partner are doing OK with the diagnosis. I know it’s what you expected but hearing the words can still be a bit of a kick in the guts. You’ll perhaps need to take some time to get your heads around it.

Sue

Yeah relapsing remitting. She seemed more focused on telling me how to spot a relapse than DMDs but we will see when I have my appointment. I’ve only had two attacks in two years and they seem to want to put treatment off for as long as possible from what was said. To be honest it hasn’t really sunk in yet.

To be honest, that sounds like a bizarre way of looking at newly diagnosed MS. If she’s telling you how to spot a relapse, then surely that implies she expects you to have them, so prevention would, to me, seem a sensible state of play.

But, as you say, it’s not altogether sunk in. So take your time. Talk to your partner, and have a think about how you want to manage it.

Sue