I hope everyone is fine in these hard times…
I was diagnosed with MS last February. After seeing the neurologist, she told me that they needed to run some more tests(bloods test, another MRI because my last one was in December and the lumbar puncture) and then I will start treatment in May.
They cancelled all my appointments because of this situation, fortunately I had the MRI 2 weeks ago, and the appointment that I was supposed to have with the neurologist to start treatment has been cancelled and they don’t know anything about when they are gonna call me…
I am worried because with all these going on (and the neurologist told me that I needed to start treatment as soon as possible) I don’t know when I will start treatment, maybe after summer or who knows…
Just wanted to share this with you and if anyone could tell me if they know if the MS get worse if I don’t start already the treatment (I had a flare-up last December, that’s how they started to run the tests to see if it was MS) but I may have it for more that a year…(looking back I realised that I had a lot of symptoms that I didn’t know it was that)
Thank you in advance and hope everyone is fine!
I’m also new to all this and as such I am by no means an authority on anything. That said, my neurologist is keen to start an appropriate treatment ASAP too. I have read numerous articles now that describe the catch-22 I am currently facing, which is whether to take the risk of the side effects with disease modifying treatment, or decline treatment and take my chances. It’s possible to take the DMT unnecessarily as you were never destined to have another episode, OR decide not to take a DMT and experience a severe relapse that could have been averted. There is no way of knowing, but a neurologist would want to get you on a DMT as soon as possible IF that is your choice, because to delay treatment when you want it is arguably the worst of all worlds.
Just my thoughts…
The problem with MS is it’s unpredictable. You could start a DMD and never have another relapse. You could not take a DMD and never have a further relapse. Or you could find that without a DMD you have many relapses. Or indeed (my experience) the DMD you try doesn’t suit you and you either will or won’t have relapses.
The general rule of thumb (this is my belief and also the belief of many MS specialist neurologists), is that once diagnosed with relapsing remitting MS, start a DMD as soon as practical. In today’s world of Covid19, that’s less easy to sort out. It doesn’t make it impossible though. What is less likely just now is starting a more invasive therapy, for example Tysabri or Lemtrada.
It should be possible to start on, for example, Tecfidera relatively quickly. It’s an oral therapy, doesn’t require too much in the way of pre treatment investigation beyond basic blood tests and it’s delivered to your door.
Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid to see what DMDs are available in general and have a think about what you want to do. If your feeling is that you want to start something like Tecfidera, contact your neurologist or MS nurse (assuming you’ve been assigned one), and ask for it. Or just contact them and ask for a modifying drug of some kind ASAP.
If however, you prefer to wait a while before beginning a DMD, that’s very much your choice too and a perfectly valid choice.
Best of luck.
thank you very much for your response!
Are you being treated by the NHS?
I understand what you say, honestly, I don’t know what to do because they cancelled all my appointments and a few of them they didn’t even told me and I had to call them several times to know what happened…and when I call to the department they say to me that I have a telephone appointment but that they don’t know when it is gonna be done.
So the whole point of this is that I am feeling a bit unprotected by the system, I don’t think is ok to have a new diagnosis and keep waiting and waiting and they basically ignore you…I understand the pandemic situation, but I think they should had call me at least to give me options or to tell me something regarding my situation because I have a lot of doubts and I am here in the limbo…
You told me that you are new in this, are you facing the same issues as me regarding your appointments?
Thanks for all the info, it is really helpful.
I understand the issue now with this situation, the thing is that my neurologist doesn’t call me, I have an appointment but they don’t know when they are gonna call me, so I don’t even have the choice to speak with her and know my options.
I guess I will have to wait…
thank you very much,
I am being treated by the NHS yes, although I would say ever so slightly haphazardly. I’ve dealt with two neurologists, both of whom seem to believe the other has told me more than they have, and after one told me I was not to return to the hospital for some time after the initial course of steroids, I ended up at two hospitals on one day at their instruction for further tests…
I did have to chase up a telephone appointment, but it was made relatively quickly. I know what you mean about the NHS, it’s one thing to say they’re under pressure, but when that delays your own treatment the understanding can wear a bit thin. I would advise trying to speak with the neurology secretaries, find out which neurologist you are specifically under the care of and then if you can’t get a concrete appointment booked, maybe consider the patient advice and liaison service if you still feel you are being poorly treated. Just a thought.
I received as definitive a diagnosis as they can give last week, but am currently undergoing tests for other even less common conditions, while also awaiting a screening for the DMT that he would like to put me on. So a few questions still outstanding, which appears to be a common experience.