I appear to have been ‘dumped’ by mine, since I’ve been promoted to progressive, I used to see them regularly. Even the MS nurse has gone. I have a new (I say new, I’ve actually had it 12 months) injector pen & I have been waiting to be shown how to use it, oh well, another dust catcher in the house. I did enquire to why I still needed my DMD, but apparently they are quite happy to let you carry on for a while. Nothing has fell off at the mo, so I will continue to inflict myself with needles, just for the hell of it, so it seems. I did receive a random letter recently ‘I can confirm Mrs Dc has indeed had the correct diagnosis of MS & is suffering from neuropathic pain’ you don’t say, who would have guessed that? I’ve only been dx 12 years, so at least now I can be absolutely assured I have MS, I would have been bloody miffed if they had got it wrong & years of unnecessary meds & painful injections would have been for nothing but hey ho they know best.
Thanks for your support everyone. Feeling a bit down today. Numbness has spread even further and my muscles feel tight and legs heavy. School holidays here and my girls are having to sit in with me. Making me feel a bit of a crap mum if I’m honest,
wish the list to see a neurologist wasn’t so long 
Go girl, Go girl, Go girl… This total thread is FAB! Welcome Becca.
Yep, we’re the experienced ones.
Aside:my mum, having her 6th baby, was being told how to control contractions by a newly qualified midwife… aged about 12 according to my exaggerating mum. Anyway, mum soon asked the midwife how many children she has, answer was nil, Mum said, well this is my flippin’ 6th, so I think I know whether to push or not.
Similarly, Tracey, Pols etc are so right. We are the one’s with MS and we know exactly how it feels, even if we have different symptoms, someone in here will be able to help.
Your GP sounds fab Becca, good for him having a go at the hospital. It took 6 years from my first MRI in 2005 to a diagnosis 2011, then another 5 yrs to confirm it’s ppms!
You are SO right Becca, you are still you and MSD is just a label xx
The gp I saw yesterday is the first person not to just shrug me off. I’m asking for him each time from now on.
I had an MRI 7 years ago after getting optic neuritis and it came back clear.
Have had roughly 7 relapses since and each time fobbed off.
Last mri showed lesions that was a year ago. Had VEP done and never received results despite calling several times.
Here I am now with not my scariest relapse but it’s pretty awful. It’s the anxiety I can’t cope with.
Just had my 12 year old in tears out of the blue saying she hates it when I’m not well trying to hold it together.
My relapses usually last about 4-6 weeks so I’m hoping it’s the same this time.
Anyone else’s usually follow a pattern or is it just a wait and see thing?
Aw Becca, poor you.
The wait is interminable. Living in limbo is horrible. And suffering a relapse simultaneously is nasty. I’m glad you’ve seen a sympathetic GP. It’s quite a good idea to ‘adopt’ a GP at your practice. Theoretically all GPS within the practice will have access to the same notes. But that’s not the same as a GP who has got to know you over time.
When mine emigrated to Australia a few years ago I was devastated. But I now have seen another one enough times that she knows my history and knows that I’m a responsible person who can decide things for myself, such as when to take drugs.
So, stick with the good un. And let’s hope your relapse remits nice and quickly.
Dont let the children wear you out.
Sue
Dear Becca, just to let you know, that although I said I went private…I met with the NHS neurologist today and he said that he wants to re-diagnose me because he forget to get my scan results from the sister hospital. Arrrgh. I was hoping for DMDs discussions. Ten week wait for lumbar puncture and further scans. He says that I should go back to GP for intermediate support while I am waiting. Scared because symptoms seem to be accumulating. Lots of new symptoms and very little professional support. This forum is really the only way of getting information. Remember to keep a dated diary of symptoms for when you finally meet the professionals. Patience x
Thanks sue. I’m definitely keeping the same doctor as last time.
I believe I have the lovely ms hug with the numbness in my legs now too. I have like a band of pressure around the bottom of my rib cage and back. It’s not painful more annoying than anything.
Im finding that keeping busy takes my mind off of things.
Ive had a nice warm bath with Epsom salts and it’s really helped relax it all.
Still no word from docs as to when my appointment will be so I’m calling tomorrow to find out.
Thanks all for your replies it’s so reassuring that there are people out there who can relate to me
becca x
So I received my appointment today. Sat in tears here. Can’t be seen until the 27th November!!
How can I be left for that long? It’s disgusting!
Im kicking up a fuss and may have to go private:(
feel like I’ve been fobbed off for 7 years and then told to wait another 4 months.
Becca
Try phoning the hospital appointments team to see if they can move you up the queue a bit. After all, your GP was apparently referring you ‘urgently’.
Failing that, try the neurologists secretary.
Failing that, try to find out if the neuro you’ve already been referred to has a private practice. Or find another MS specialist neuro who has both a private and an NHS practice. Get your GP to refer you to the private practice, then hopefully you can be transferred back to the NHS for tests.
Obviously, you could go back to your GP and say that their urgent referral has gained you an appointment 4 months away.
Sue x
Ok so I was told just to wait so I have a private appointment next Wednesday with a neuro who works at the same hospital.
What can I expect of that appointment and what should I ask or tell him?
will he have access to my NHS records etc?
Becca x
Try phoning his secretary to ask whether he’ll have access to your NHS records. Chances are he will if you are seeing him within that hospital, but if his private clinic is outside the NHS hospital then maybe not.
So, in that case, write down some notes about what has happened to you and when, roughly how long symptoms lasted, where you are now and what you want to get from the appointment.
Oh and don’t be embarrassed about reaching for your notes during the appointment, make sure your questions are answered.
Sue
Thanks that’s really helpful. I’ve been writing things on my phone in the notes section. I believe my mum has written it all in her diary too lol. Every time I have a relapse she knows how many months it’s been since the last one.
Im hoping he will have access to them or surely he won’t be able to tell me anything at the appointment and it will be a waste of money? I’m so confused how this all works
i will call his secretary tomorrow and ask
Thankyou for always being super helpful sue
becca x