Hi my name is carrie. I was diagnosed in 2015 with RRMS. I had been goin to my gp with symptoms that were ongoing from 2013 & he referred me to a neurologist. Think I’ve had maybe 6 MRI’S which show many lesions all over my brain & spinal cord. I was then referred to Belfast which is where our main MS clinics run here in Northern Ireland. I had 1 initial consultation & was suggested I take tecfidera that was in February this year. Since commencing treatment I haven’t seen or spoke 2 a neurologist or an MS nurse. You are supposed to be monitored whilst on this treatment but as I can’t access the people I need I have asked my own gp to do so. I had my bloods done last week. I have tried to contact my neurologist & my ms nurse, they are never available so don’t take calls with no option to leave a msg… The trust have sent me 3 appts for clinics but have cancelled them all as they have told me all clinics hav been cancelled on my dates so there’s nothin can be done they will reschedule. When I contacted the MS society it was confirmed there is a huge problem within Northern Ireland when it comes to appointments, reviews & treatments etc. I’m now wondering how many people have been left in limbo with regards to this???
hi carrie
i’m sorry that your geographical situation has meant that you don’t get proper follow up to to your tecfidera.
i’m in greater manchester and always get seen by an ms nurse every 3 months.
as long as your GP is abe to monitor your bloods to avoid PML you should be ok but this situation is far from ideal.
just keep on keeping on because that’s all we can do.
good luck and god bless
carole x
Hi Carole
Thanks for your reply!
Yes your right it does seem to be a postcode lottery, then with the news I have read regarding delaying treatments for people newly diagnosed with MS in ni is very worrying. It’s hard to understand how areas across the water are so switched on with regards to follow up, treatment & advice while back here it’s almost impossible to speak with a neurologist or MS nurse. Is there a shortage of available staff in our health service? & Why are our waiting lists spiralling out of control? Is this due to staffing issues again?
I’m lucky I have started treatment & my GP is fantastic. Also information from this organisation & message boards available on here offer fantastic support for everyone affected.
Carrie
Hi Carrie
It does sound as though the Northern Irish suffer more with poor MS services than anywhere else in the UK.
At least you have a good GP. With Tecfidera, it’s important to get your blood checked regularly, at least every three months. In particular, it’s the full blood count that’s important. One of the side effects can be depleted white blood cells, in particular lymphocytes and neutrophils. Lowered lymphocytes leaves you open to viruses in particular as they are the cells which fight viruses. The expectation is that your white blood count, in particular lymphocytes will dip down initially, this is what the drug is supposed to do (to reduce the inflammatory action which causes relapses) but within a few months, the count should go back up. Lowered neutrophils leaves you open to infection, so they shouldn’t be below the norm either.
If your lymphocyte count goes down to below 0.5 and stays that low, you should be advised (by a neurologist!) to come off the Tecfidera.
Even if your GP is unaware of the potential side effects of Tecfidera, it would be normal for them to get full blood count done pretty much every time your blood is tested.
Sue
Also from Belfast, the MS Nurses are indeed overworked, however, I often find emailing my nurse to be the best option.
I have my blood tested every 3 months by my MS nurse and am also required to take a urine sample with me - perhaps you should ask your GP if they can test this for you too
Hi if you are Dr [Dr. name removed] patient his clinics have all been cancelled since the end of May. My appointment was called in July If you need to speak to an ms nurse you are better e mailing them. Jenny
Hi if you are one of Dr [Dr. name removed] patients his clinics have all been cancelled since the end of May . My appointment was cancelled in July when I phoned appointments at the Rvh I was told they had a note of everybody’s who had there appointments cancelled and they would be in touch when his clinic was up an running again.If you need to speak to an Ms nurse you are better e -mailing them. Jenny