Hi everyone. It’s hard to know where to start, really. Got diagnosed Nov 2020 and soon to turn 21 next month. From the start, I badgered my neurologist to give me the strong drugs since current research suggests a better outcome for those that hit MS hard and fast with a strong DMT. Each time he has said no. I resigned myself to doing as he said by taking the Tecfidera last year but quickly stopped as it gave me stomach pains from hell. The next one - which I’m currently on - was Aubagio and I’ve been on it for a couple months now. Only side effect that’s bothering me is severe hair shedding. However, I still feel vulnerable on this and am due an MRI to see if it’s doing its job. Plus, lately I’ve felt heavier in the legs and more unbalanced so I’m worried it’s not.
I’m really at a loss for what to do. I feel rather lucky that I’m tolerating Aubagio (apart from being very upset at hair loss that doesn’t seem to be letting up) but I can’t let go of my want to get on something like Ocrevus or Kesimpta. My neurologist isn’t even a specialist and isn’t allowed to stray from the escalation model! Are MS specialist neurologists even available on the NHS??
There are indeed NHS neurologists who specialise in MS.
There are some in private practice and some who work both NHS and private. If you take a look at Google you should find some good info.
All the best
Mick
@Mogace I’ve only been able to find private MS neurologists that are quite expensive. No NHS ones that I can find. If it’s no bother please could you link me to some NHS ones? I’ve also never had to change neurologists and don’t know how to do it. Do I just ask the GP to change to a different one? Appreciate any help.
I had a recommendation to see a (private) neurologist in London. I had a couple of appointments and then he told me that he also had an NHS clinic, he was able to contact my GP and get a referral request to the NHS clinic.
From this I gather that your GP can request a referral for any neuro services so your job is to help identify any specific neuro service.
There certaintly are MS specialising neurologists, mine is fantastic and put me straight on to Ocrevus (diagnosed end of 2021, started medication around May this year). I would ask your GP if theres anyone they know of that they could refer you to, or go to a private GP and get them to (someone I met while having infusion had done this as they were unhappy with their treatment plan, so went private and was referred to my neurologist). Good luck!!!
Hi I hope things are improving for you since you posted.
I’ve been offered Aubagio after 2 rounds of Lemtrada and like you am concerned about hair loss. My neurologist said it would be one cycle of hair loss and then it would regrow.
If you don’t mind me asking, how are you finding the side effects on your hair now?
Thanks x
Hi Christina. Yes, things have improved a lot with my hair since then. It has stopped falling out now but it did take about 3-4 months (started to shed in August, if I remember correctly). Will take a while to get back to original thickness. Having an MRI this month so hopefully I won’t have gone through this for nothing just to have more lesions.