Me again. So sorry but overwhelmed here. Finally official and I guess I was wondering why I feel so let down by the appointment today. They acted like it was some big reveal. I had been living with this diagnosis since aware several
Months ago via a phone call at work. I have kind of researched it all and been very good at documenting symptoms. The appointment without going into made me feel violated, dismissed and belittled. It has made me feel irrelevant and that wasting his time and my symptoms were manifested due to research. I was made to feel that I was being done a favour and lucky in that I qualify for treatment. I wanted walk out. Is the help the nhs give MS just about drugs? Today was supposed to answer my questions but i did not. Are
My expectation too much? What should have happened today?. Did not ask once how I was feeling. All I have is the image of my ’blobs’ and a feeling of being pathetic.
Hi @rachel.sian.hart can I ask what was the appointment/ who with? If it was your first appointment to confirm the diagnosis and with a neurologist then his/her priority would have been (should have been ) to get you started on a Disease Modifying Drug and providing you with a 2-3 options.
By and large they don’t have time to discuss how you are ‘feeling’ other than to ask if you have had any significant changes in symptoms.
At some point you will have an appointment with an MS nurse who will probably have a little more time but again the focus will be on symptoms ( e.g problems witch mobility, eye sight etc etc) if you are struggling mentally and emotionally then tell her/him and ask about any support for this. She/he might then be able to refer you to relevant services.
Thank you. So stressed after the appointment and feeling down. Was not sure what my expectations were but it was exactly as your reply said. Guess living with symptoms that was what I was hopiing would go away after meeting.
Hi again @rachel.sian.hart . Not really knowing you I’m finding it a little difficult to know what to say but here goes. It’s a long time since I was diagnosed ( around 19 years). I was lucky in not having any symptoms other than loss of sight in my right eye ( in time the sight returned) but I do remember it as being a really scary time and very disorienting- hard to know what was real anymore and massive anxiety about my future. One thing I did was to find out as much as I could about MS the development of symptoms and disabilities. One thing I learned was that things were not going to get worse overnight, next week, next month. MS isnt like a fast developing infection! I also discovered that yes things do move slowly in terms of diagnosis, being provided with an MS disease modifying treatment and getting the first appointment with an MS Nurse. The Nurse will be able to help with some symptoms but unfortunately there is often no ‘cure’ for the symptoms. There are things that can help and reduce the symptoms but not cure them so yes sometimes it’s a matter of learning how best to live with them.
I don’t know what your symptoms are but if you look through the Symptoms and Treatment section of this Forum you should be able to find what treatments people have been using/getting and how they manage the symptoms.
The harsh reality is that there is no easy way out of MS and MS does demand a lot of us!
I am wondering if when you first see your MS Nurse you might want to ask about counselling type services for people with MS? The shock of an MS diagnosis is an awful lot to deal with and throws up many questions and anxieties.
I can’t remember if I have already said this but I’m on one of early and low effectiveness MS treatments and after 19 years I am still walking ( admittedly with some difficulty) I have some problems with bladder urgency and constipation but they can be managed. Overall, after 19 years and at age 72 life isnt too bad. What’s more is that the newer MS treatments are significantly more effective than the one I’m on. Take heart.
hey rachel,
I’m sorry to hear about this. I can’t answer your question, but I can offer my experiences. I had a relapse in sept 2024, and many unpleasany symptoms have slowly improved over this time. after diagnosis last december, I saw a neurologist this week. his manner was pretty brisk, but I did trust him, though the appointment was not at all what I expected. I had done a lot of research and compiled a list of drugs I liked the look of, and there were things I thought we would discuss but the appointment (rightly or wrongly, I couldn’t say) was very much on his terms - he felt I was recovering well, albeit slowly, from the relapse, and so decided against putting me on DMDs at the mo, and put me down for another scan.
I was encouraged, confused, and a little disappointed all at once. I realise the immense stress they are under, and while his point was I seemed to be doing okay, it still left me feeling a little vulnerable, I suppose. I had a huge list of questions (albeit probably too many) that we did not really cover.
I hope that helps in some way.. it’s very hard to know what to do here. I can’t afford private, but a bit of me wonders if I would have more input/sway if I had gone private. then again, is that necessarily a good thing? in large part I want to trust what I’m told, even if it was unexpected…
I am sorry that your expectations were not met. For what it’s worth, I have had RRMS for 25+ years and no one medical has ever asked how I feel about that. The answer to your question about whether the drugs are basically all they’re offering is, basically, (I think) yes. And that really is the key thing. Friends and family can do support. NHS does cold hard drugs, and fortunately they’re bloody good if you get on the right one, which I hope you quickly will.
I hope this does not sound dismissive - I don’t mean it to - but the NHS is definitely best at the drugs bit. It isn’t just you - that’s a general point.
I am sorry about your diagnosis.