I was diagnosed a couple of years ago with MS after 15 years of living with the condition, having countless test but no diagnosis. The care i received before diagnosis was fantastic however since i have been diagnosed i have had no follow up appointments with either an MS nurse or the neurologist. I have been told basically ring the nurse if you need her and now you have been diagnosed, you don’t need a neurologist until you have a relapse. Is this normal practice or am i just unlucky with my lack of support.
Hi, doesnt sound too good re support hun.
Many MSers are discharged after diagnosis and it gets me really mad…of course you need support…there are so many differing symptoms with MS, that you should be able to ring a specialist nurse, or at least have an annual check up with a neurologist, to ask important questions.
Maybe you should see your GP about this and get his/her advice.
Were you told which type of MS you have?
i hope you have been offered a dmd - disease modifying drug.
the ms society has been campaining about this - treat me right campain.
if you really need to see your neuro ask your doctor to contact him/her on your behalf.
some of them need a kick up the bum from time to time!
mine have been brilliant. the postcode lottery strikes again.
If they’ve said you call for help when you have a relapse, they seem to be saying you have relapsing remitting MS. Which means you should be offered a DMD.
I agree with Poll and Carole, get onto your GP and get them to refer you back to the neurologist, or if possible, a specialist MS neuro (assuming the neurologist you saw wasn’t a specialist - if s/he is a specialist, then they’re a disgrace!).
Whether it is RR or if they think you have a progressive form of MS, you should also have access to:
a) an MS nurse
c) effective symptom relieving drugs
d) referrals to other specialists as required (urology, psychology, OT, etc)
Being diagnosed then left to get on with life is just not on.
I think this is normal, my MS nurse even wanted to discharge me. Well, maybe not strictly true, she asked me if I would like to be discharged…NO! Whatever next! I ring her if I have a problem.
Thank you all for your comments. I have been back to my GP today who agreed that i should have an annual check at the very least (she is new to the practice and has a specialist subject in neurology). She couldn’t believe i had just been left to make contact if i have a relapse and that id not been told about the drugs available to me or the services offered. She couldn’t apologise enough and said the way i had been left wasn’t good enough and she would personally contact my neurologist…
I think there is still a postcode lottery when it comes to support.
I was diagnosed 15yrs ago and since then found it hard to get the support i needed.
I have spoken to an MS nurse twice in that time with little help/advice. After getting lost in the system i had to pay privately to see a neurologist to regain access again.
I wasn’t offered DMD’S and now i’m classed as SP it’s too late for me. I’ve had few MRI scans so when i have seen a consultant its been difficult for him to chart my progression.
It’s so frustrating, that no matter how hard you try you cannot get the support you need. My GP has been of no support either.
I do empathise with you.
same here Lisa,i was discharged on diagnosis and just left to get on with it for 24 years,my dr said a few year ago she wanted me back in the system, so i had a few yearly check ups,which were a waste of mine and the neuros time,then i was struck off as i was too ill to go to 2 appointments.
In my opinion you should have at the very least an annual consultation with your neurologist, even if there are no significant changes I use it as an opportunity to ask if there are any interesting developments in research or NHS practises. It also means that they should re read your notes before or during your visit which opens the discussion about changes or options.
This goes to my particular “bug bare” you need to be comfortable and confident that you have the right professional support team.
For me :
GP hardly knows I exist, much less that I have MS: Therefore I would only go if absolutely necessary and be prepared to make a fuss.
MS nurse - Brilliant: we understand each other and I dont see her often but if I ask for help she WILL be there.
Neurologist - After several useless waste of space neuros I now have access to a great doctor who listens and in whom I have total trust and confidence.
Good luck and don’t let inertia get in the way of getting the right help.
Hi these are the recent NICE guidelines for management of MS. Published Jan 2016.
Service providers (neurology services) ensure that systems are in place for adults with MS to have a face‑to‑face follow‑up appointment with a healthcare professional with expertise in MS within 6 weeks of diagnosis.
Healthcare professionals (consultant neurologists) ensure that they offer adults with MS a face‑to‑face follow‑up appointment with themselves or another healthcare professional with expertise in MS, to take place within 6 weeks of diagnosis.
Unfortunately my experience was also rubbish when I was diagnosed RRMS (also before diagnosis was rubbish too). I didn’t get an appointment with anyone until 7 months after diagnosis and that was with a general neurologist that didn’t bother chasing and looking at my MRI scans. He just said he had not seen my scans and that was it. I got an appointment with an MS nurse over a year later.
The following page from the NICE guidelines ‘MS overview’ has information to click on.
After diagnosis 33yrs ago - l went another 26yrs before seeing another ‘neuro’ and have no access to a MS Nurse. l think because l am PPMS - they feel they cannot do anything to help. From the neuros l have seen - they do not seem to know much about MS.
Thank goodness for your GP. She is totally right and sounds on the ball. If you continue to get no joy from your neuro find another one.