I saw a neurologist today after being diagnosed with MS. This was due to two MRI scans since last April with the second showing new lesions from the first, plus a positive result from a lumbar puncture. However, I was sent away with “see you in a year’s time”, and nothing else apart from being referred to physio and to see the nurse specialist. I was expecting to be prescribed DMTs and was worried about what the side effects may be. But now I am worried about not being prescribed DMTs because I’ve read they should be taken as soon as possible after diagnosis to prevent ongoing damage that doesn’t always show symptoms. My symptoms so far have been a weakened and stiff right leg and arm that makes walking hard work, and this is gradually getting worse. Do I have to have further attacks before given preventative treatment? The neurologist did say that they have to weigh up the side effects vs the effectiveness of taking DMTs.
You are right that current practice seems to be heading more and more in the direction of early intervention. But not all neurologists agree, of course, and they all have their own clinical experience to draw on and not all of them are terribly interested in what happens to be fashionable. Plus, naturally, your neurologist knows more about you and your MS and how it is presenting than do a whole host of clinicians who are not your neurologist, be they ever so expert in their field.
I had sort of expected that your post would say that your only symptoms had been sensory and mild and had resolved fully. I must admit that I was a wee bit surprised to hear that you were having motor problems that they had not completely gone away. It is, to tell the truth, a bit surprising to me that your neurologist is so hands-off about the management of your MS, given what you have told us about how it has affected you so far.
As I say, your neurologist is the expert and I feel uncomfortable about saying this, given that I know damn all about it. But I’m going to say it anyway: in your shoes, I would be thinking about getting a second opinion, quite frankly.
Thank you for your answer Alison. I don’t really have a neurologist as the one I saw is a locum, but this is the second time I’ve seen her. On both occasions she obviously hadn’t looked at my history as she checked my notes during the consultation to answer my questions. Therefore I am wondering if it was the same today and she didn’t understand my full history. As to my motor problems, I’ve been told this is permanent as it is probably due to existing scarring, but as it is so debilitating, I am scared of waiting until something else happens. I’m not really sure how I would go about getting a second opinion, would that be within the department or with a different hospital?
I had the same experience with a locum,he wa now s ,crap m ss very abrupt saying that I was too old for m s and everybody had lesions (carp was the word my new neurologist actually said) second one was after I went nearly hysterical .hubby took me straight to my g p and read the riot act.outcome another m r I that showed more lesions and active m.s.you fight for second opinion I have just started my d m d today so good luck and take care.
I’m still CIS but have been offered DMTs. Though to be honest it was left totally up to me whether I wanted treatment and which one to go for out of the interferons and copaxone. The neurologist said to discuss with MS nurse who just sent me a book and then asked me which, if any, I wanted. Whilst I’m glad to have been offered DMTs, I would’ve appreciated some guidance on whether to treat or not and which to choose. I’m quite envious of those of you who’ve attended a DMT day and had things explained to you plus actually seen the different methods
This is compounded by the fact that my symptoms are sensory and mainly just occur overnight. Can’t argue with positive LP though and 2-3 possible brain lesions. Still nervous about taking on treatment that could make me feel worse especially if it’s not indicated.
Going back to the OP, I’m wondering if the neurologist is thinking PPMS and that’s why treatment isn’t being suggested. Don’t rely on me though as I’m new to all this. If it were me I’d get a second opinion from ms specialist.
Im very new to this and am still awaiting lumber puncture, so my knowledge is pretty limited. However, as I understand it, it is now considered important to start treatment early in most cases. Early treatment would seem to be the default position now. Thhererfor, if the nuero you saw did not do this, then I think she should have provided an explanation as to why. Maybe you can write and ask for one.
As to second opinion, you are of course entitled to one on the NHS. but I think it might be important to ensure that the second opinion comes from someone specialising in MS. If such a person is not available in te hospital you went to then I would ask to be referred elsewhere. I think whether u take DMD and what type can have a major (the major?) impact on the progression/ non-progression of an individual’s MS.
How you find the best consultamt, I dont know. Maybe MS society has a ist of specialist consultants or at least specialist MS centres. Also could maybe post on forum, say what general area you live in, and ask if any one can recommend someone?
Also, Jenefar, if you select the ‘near me’ tab at the top of the page, you will find information about who are the MS specialist neurologists in your area. Your GP, if you have a good one, should also be a good source of info and advice on how to proceed.
Thank you for all of your support and advice, it’s much appreciated. It’s also reassuring to read other peoples’ experiences and opinions. I am due to see the MS nurse in a few weeks so am wondering if I might be offered DMTs then, but if not, I will follow your advice and try and find another neurologist with MS speciality - ‘fingers crossed’. To have some control of this thing would be a relief.
Good plan to ask for the MS nurses help. Rupert (Bob) really seems to have learned a hell of a lot since coming on here as his advice is excellent. I’d probably write and ask the neurologist whether s/he thinks a DMD would be useful. At least that way you will / should get a written reply as to why you’ve not been prescribed DMDs. You could even ask in your letter whether there’s an MS specialist to whom you could be referred.
Many hospitals list their consultants and their specialisms. It maybe that the reason you saw a locum is that they are lacking a neurologist at present; maybe there’s another hospital within the CCG you come under (that’s Clinical Commissioning Group, what used to be known as PCTs) where there’s an MS specialist.
Thank you Sue. The letter idea sounds great, and you’re right, the hospital concerned is short of staff. There is an MS specialist in the department but I think it’s difficult to get to see him. Am looking forward to seeing the nurse now as hopefully this will ease my concerns. Once again, thank you all for your very useful advice.
Reading all this sounds so familiar! Diagnosed in December but via seeing the consultant privately. Referred back to him (at his request) via gp so he could see me in his NHS clinic. As you expected a conversation about DMT which never happened. Seeing MS nurse on 1st March and expecting to have that conversation with her but we’ll have to see.