Struggling to get on with new neurologist
Hi, I was diagnosed with RRMS in October 2009 in England and my neurologist at the time was really great and very supportive. He always gave me the confidence to make my own decisions about my treatment and very much encouraged a healthy lifestyle, understanding what triggered my symptoms (conflict, anxiety, deadlines, tiredness) and gave me his opinion that he didn’t think I should be on medication at the moment, but stating that I could try it if I wanted to.
I’ve had several relapses over the years varying in severity, but I consider myself to be very lucky compared to other people’s experiences.
I moved to Ireland two years ago and my new neurologist couldn’t be more different. She views it as a failure of the NHS that I wasn’t put on medication long ago and it’s all she ever talks about, putting more and more pressure on me to try Tecfidera. Whenever I mention an MS symptom that I’ve had, she often tells me that it isn’t an MS symptom (the pain that I sometimes get in my left eye for example when I’m having a flare up, she says is migraine) and she never asks questions about my lifestyle, what triggers the fatigue or how I manage etc, it’s only about how I should be taking DMDs. She talks over the top of me and I dread my appointments because she makes me feel irresponsible and stupid whereas I’ve always thought I was managing my MS very well.
I’ve never received any advice regarding managing MS without medication, despite it apparently being a choice that the health service supports. My husband says that I should be more assertive but I find that very difficult.
I’m not anti medication at all, I just feel that at the moment, I can manage ok without it, especially as I’m going through a whole gamut of perimenopausal symptoms which are causing lots of extra symptoms. I don’t feel like I want to add medication side effects to the mix
Has anyone else dealt with huge differences of opinion with neurologists, or felt intimidated and undermined by the way they treat you? I don’t know whether to look for another neurologist or not. For the first time since being diagnosed, I feel a bit lost and very unsupported and don’t really know where to go when I have symptoms.
So far, the only medication I’m taking is CBD oil once a day which I have really found helpful, especially in easing the tight, painful face muscles I often get when I’m tired or worried about things. I haven’t told my neurologist that I’m taking CBD oil, I have a feeling that I already know what her response would be.
I'm sorry to hear about your concerns about your new neurologist. I'm surprised that the new one isn't supporting you to remain drug free, lord knows it's the cheapest option for the health service! I understand that Dr's can be intimidating, I have an upcoming appointment with my neurologist, who I've only met once, and it's worrying me. Just remember that it's your body, and only you can decide what the doctors can do to it! I have been arguing with doctors since 1985 (type 1 diabetes), and you eventually are listened to, but it's not a fun journey, I sincerely hope it works out well for you.
@Compostkid Well, there is no harm in getting a second opinion. We forget that neurologists are human as well, and not all of them are people orientated. You can ask your GP to be referred elsewhere. With regards to the DMT, I would personally get on one. I went undiagnosed for the first 8 years of my MS and during that time, I've suffered relapses which, in turn, have done their damage. Once I was diagnosed and on a DMT, the relapses stopped. So from my view, I would rather be on something that is, potentially, stopping any further damage being done and possibly slowing the disease. By the way, my face goes numb when I get stressed or anxious. Menopause - been there, done that, got the T-shirt. Treat it separately to your MS. Did it impact some of my symptoms, probably, but having never been through the menopause before, whilst having MS, I don't have anything to compare it to. The menopause was never a topic of discussion whilst I was being treated for my MS.