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Newly diagnosed, waiting on treatment and struggling

Hi, I’ve posted already! Diagnosed nearly 6 weeks ago privately! Waiting on neuro appointment this Friday, have gotten worse and been struggling with heavy stiff legs/picking up my feet! Got MS nurse number from my doctor and they don’t seem interested and saying they have no info on me and that I’ve complicated things by going private!!! So presumably I’m going to get appointment with her after I’ve seen neuro! The waiting is killing me, lost all my confidence as struggling to walk and balance been all wrong! Am guessing I’ve had a bit of a relapse!! Just so disheartened and down, the neurologist who diagnosed me was so positive about how I could lead a fairly normal life with meds and some lifestyle changes!!! Am wondering if neurologist will be able to prescribe me something for stiffness and heaviness of my legs! I want to go prepared and going write down questions, just know so little! How often do u see neuro? Who changes meds if they don’t work? Do you get follow up appointments/scans every year?! Hoping I get that initial positivity back!!!

Trying to be as active as I can, stretching off my legs and trying to exercise as much as I can. Not working due to nature of my job!

Thanks

Sarah

MS nurses are usually acting on behalf of the NHS Consultant Neurologist whose patient you are (or will be) and who is the nurse’s boss for these purposes. So it would be normal to see the Consultant first at an NHS clinic, even if he/she is the same person whom you saw privately. But don’t panic: that will probably happen sooner than you think (but do make sure you are clear about who is referring you onto the Neurologist’s NHS list - him/her or your GP? Fumbles can happen with appointments for new patients, so do keep an eye on it and do not be afraid to ask.) In the meantime, please do not be too ruffled by a huffy nurse in a bad mood - it will all settle down what you are back in the groove of the the NHS hospital system.

I am sorry that you have joined the MS club.

Alison

I had missed that you already had an appointment with the NHS Consultant and that it happens later this week - that’s great news.

Alison

hi sarah

you should start writing a list of questions for your neuro appointment.

the main one being your choice of DMD because this will be a big one.

as for your individual symptoms the neuro is likely to suggest neuropathic painkillers or write to your GP asking him/her to do this.

your ms nurse will be an even bigger outcome of your neuro appointment.

you are very unlikely to have an MRI every year because they are expensive and the NHS doesn’t do expensive.

i’m a little shocked that the private neuro didn’t send your results onto the NHS system.

i have had annual appointments with my neuro for the first few years but now see my ms nurse every 3 months to monitor the drug i’m on (tecfidera).

carole x

Thank you for your replies. The MS nurse has confirmed what the private neuro said, that my MRI results I got privately will be accessible to the NHS neuro and he has been written to with all my results. I’m guessing it’s just this next bit that will get me referred to the nurse properly!

its just been this 6 week wait, worried and stressed about the fact I’ve got worse but just 3 days to go and hopefully I’ll feel better about things.

Sarah x