I have PPMS and am on Betainterferon.
I had a medical booked for the 7th June 2024.
This was then cancelled and rescheduled to the 12th July 2024.
This was again cancelled and rescheduled to the 23rd August 2024
Then on the 11th July 2024 this was again cancelled with no rescheduled appointment.
since the I have heard nothing back and every time I phone the appointment phone number it goes straight to voice mail.
Does anyone else have this type of problem or know how long it is safe to take betainterferon WITHOUT having any blood testing done?
Also how does one proceed when the DVLA raise issues?
I also have ppms was diagnosed 2018 took seven years to get diagnosed I haven’t seen or heard from ms nurse since then I have rung and left messages still haven’t rung me back this has been going on last few years it’s not good enough I know how you feel when was you diagnosed
I have RRMS. I was on beta interfon for 9 years, more than a decade ago. I remember I just had a yearly check-up with the neurologist and a blood test possibly.
I think beta interferon is one of the milder DMTs. I suppose if you’ve left voicemail on your hospital appointment phone number, they should contact you back in due course, so you need not worry.
Yes I believe you must contact the DVLA and let them know about your diagnosis of multiple sclerosis if you still drive. I actually didn’t but, I stopped driving for good after temporarily losing sight in one eye due to optic neuritis and then subsequently receiving the dx not long after.
It’s obviously unacceptable to keep getting cancelled without explanation, but not sure why you are taking interferon for PPMS.
Do you have a nurse you could ask about your blood tests?
This might help answer your DVLA question.
Driving with MS | MS Trust
The DVLA have been informed. The problem comes when renewing the licence as they both need to know the date of the last consultation and be able to contact the Consultant. The “Yearly Check-up” is long overdue, The consultant is no longer listed on the hospital data base and the “Receptionist” is never there. Left lots of messages on the voice mail. The last letter sent by the hospital, now over 6 months ago, just stated “We will contact you when we are able to offer a new consultation”.
The DVLA like to “play Safe” and if there has been no medical consultation for a long time or if they can not contact the consultant they are prone to refuse re-issuing the Driving License.
My initial question was more aimed at does the NHS take any responsibility / liability when it is them that keep on cancelling the medical consultations.
In the 15 years, since diagnosis, my GP has shown absolutely no interest in my MS. The local Surgery does not carry out DVLA “medicals” unless you pay to go “private”.
Last time this was an issue the DVLA “rules” stated the medical had to be done by my own “Doctor”.
After lots of “Arguments” with both the DVLA and the Surgery the DVLA settled on a “Dementia test” which the surgery was still providing at the time.
My Consultant wanted to put me on some medication but my GP refused to prescribe it. According to the Surgery web site I need to go on-line and book up at least 2 weeks in advance to even see a doctor yet looking in through the window this surgery is often deserted.
Re my “consultant” it is now many months since his name was removed from the Hospitals list of Consultants.
The “Receptionist” is always on voice mail.
I have my “Consultants” NHS registration number so I might spend a bit of time on-line doing some searches and see what turns up.
Yes I imagine it is a kerfuffle sorting out your disability permit to drive with the DVLA, they just want to ensure everybody’s road safety including yours, I no longer have the confidence to drive tbh.
I’ve seen 2 of my neurologists retire over the last 20+ years, I suppose the hand over to a replacement neurologist does take a while to settle in, I think they haven’t forgotten you though.