Can I ask a question when your were first diagnosed, which I think is the hardest and loneliest time, did your consultant tell you about support groups, local services national charities and how to get in touch with them. Seemingly someone told me this is part of NICE guidelines.
Just seems strange that everybody I’ve spoken to said their consultant didn’t do any of this, like me they found everything out by themselves.
Changes to the NICE guidelines happened since I was diagnosed (just over 2 years ago now), I was referred to an MS nurse because I asked if that was possible. The changes only happened this year though, so yes, it’d be interesting to hear what recently diagnosed people were told.
Sonia x
I was diagnosed in 2006. I got none of this back then. The consultant was abrupt and disinterested. He told me there was no cure and no treatment. When I asked what I could do to help myself, he told me to avoid heat, avoid stress, and avoid exercise. I felt like I’d been told to go home, sit down and wait for paralysis!
Back in 1998 a Neuro told me to my face that I did not have MS, only to be informed by letter that I did a couple of weeks later. Not that it really mattered, because even today there is precious little that can be done about PPMS.
Frankly, I think you are far better asking questions on this site, as they are likely to be dealt with by people that have been there and done it. The “near me” facility is useful for identifying local services.
No, mine did not tell me anything.
He handed me a bunch of leaflets about MS, which I think were published by the MS Society, but I’m not sure I ever bothered to read (I’d been a member of this site for months before being diagnosed, and diagnosis was expected, so I wasn’t exactly new to what MS is).
I didn’t even get a talk about DMDs - I was left to research them myself. With hindsight, I’m not sure whether that was intentional, or whether there was a breakdown in communication that led everyone to assume someone else had already spoken to me.
It may have complicated matters that I transferred to the NHS from BUPA, but as I kept the same consultant, you would have assumed things should have been fairly seamless.
I also wonder if I was…not exactly penalised, but fell through the net as a result of choosing not to attend a “newly diagnosed” course. It was entirely voluntary, of course, but I didn’t feel I needed it. But I wonder now whether there was an assumption everything had been covered on the course, with no thought given to the possibility not everyone attends the course!
Having said all of the above, I don’t feel there was any information I desperately needed that I couldn’t find readily enough for myself. I didn’t (and still don’t) need charities or services, so if I’d been given a load of blurb about that, it probably would have collected dust for a year or two before I chucked it in the bin - the same as the beginner’s stuff about: “What is MS?”
IF things take a turn for the worse, and I suddenly find myself needing a charity or service, I’m confident there is either something about it already on the main site here, and I can look up what to do, or I’ll just post asking, and someone will know who I need to contact. I don’t really worry about it much, to be honest. Perhaps that’s a bit shortsighted, as if there’s a very dramatic deterioration, I may lack the capacity to research or ask questions by myself. But then the alternative is trying to research every eventuality, and who to call, before any of it has actually happened, which seems quite a depressing way to approach life. I no more want to do that than to have a wheelchair parked in the hall “just in case” - which believe it or not, has been suggested by a well-meaning person.
I know the day I need it will probably be a bit late to start researching, but it seems negative to me to surround oneself with aids one has never yet needed.
Tina
P.S. as I understand it, the new NICE guidelines are only draft status, open to comment, as yet - they’re not official policy.
So it’s probably not very fair to expect consultants to have adopted something which is not yet in force.
I was formally diagnosed about ten years ago. Referred to an MS Nurse who talked me through everything. I only started having yearly check ups with her about five years ago. Consultant who diagnosed me has since retired and I haven’t been allocated another. I have never qualified for DMDs and as I’m now SP I still don’t qualify so there doesn’t seem much point in getting a consultant. My Nurse assures me if any new treatment becomes available for SP I will be informed and I can then be referred to another consultant.
Jan x
I was told 2 years ago that I had a clinical isolated syndrome which was possibly the start of PPMS. I wasn’t told anything about support groups at that time, it hit me hard, but I did get some fantastic help from the clinical psychologist at neuro when I fell apart. Back in February this year my consultant said it was probably MS and we needed to do the tests to rule out anything else and three months later it was confirmed. The consultant was very open and referred me to the MS nurse in February. She in turn made sure I was aware of the MS society, the local centre for disabled living, possibilities of blue badges and PIP.
Second time around was a much better experience.
I’ve been diagnosed 13 years (and was first tested and told “you don’t have MS” 5 years earlier) so I doubt that my experience is relevant. But no, I wasn’t told anything much. After re referral to Queens Square as I then lived in London, I was handed a pile of videos about Avonex, Betaferon, Rebif and Copaxone and told to watch them and pick one!
After Avonex gave me severe cognitive problems I was switched to Copaxone. The first time I saw an MS nurse who took any time to talk about MS was about 3 or 4 years after diagnosis when I moved out of London and changed my neurologist.
Sue
Back in1998, it wasn’t even a neurologist that told me, it was my GP,however she did refer me back to the neuro who knew that hubby was posted overseas (accompanied) and did write to the SMO and arranged that he would have steroids IV available which I never needed,but the SMO was the best, he knew quite a lot about MS, as his closest friend’s mum had it and he spent a lot of time with them during his own dad’s overseas tours, it was always a bit disconcerting seeing him though in room full of books on battlefield medicine,he remains the best doctor I have ever seen, also saw a neuro there, accident ally,hubby had torn muscles in his neck and head (he didn’t fit in the MRI scanner in Nicosia)and had to be seen by a neuro,who was fortunately making his regular round to Cyprus and he waited for me at hospital visiting time (didn’t need to see him, he was just aware that a dependent had MS and thought while he was there he might as well make sure I was doing alright,which I was at that time,)what a lovely man he was! So basically I had the best treatment from the forces medical services, I believe the SMO has since recieved an OBE for services to battlefield medicine.(not sure hubby believed me, about all the books!) I do now, in the UK,have an excellent MS nurse, neuro,whenever I see him is very good. We had only been in Cyprus a week when this event happened so the SMO was puzzled to see me with hubby on a trolley and our heavily pregnant neighbour,who had given us a lift, didn’t know whether it was premature labour,a bad accident or MS related! So no, no info,only did anything because I was leaving the country, just seemed a relief to be getting rid of me after years of telling me may be I had gout or arthiritis or maybe it was because I drove a small car etc.etc. My GP did however look uncomfortable when she read the letter to me, and so she should have.
Like Whammel, my GP told me “Don’t worry …it’s nothing nasty like MS”.
That was closely followed by my diagnosis by POST - I didn’t have the dignity of speaking to another human being!
Emma x
Hi,i was diagnosed in september 2013,then sent to another hospital for confirmation,told to stop driving and basically to stop working too,then i feel i was dumped,contacted the ms helpline who were brilliant and got in touch with ms nurse myself and thanks to the folks on here i’ve come to terms with this horrible disease.Got to keep fighting and living in the best way possible.I will always say DIAGNOSED AND DUMPED.
Mel x.
My GP diagnosed me it was quite a shock, she said “you have demyelination on the brain which might be a sign of MS”. she asked do I know what demyelination is, I said no. The GP said she felt put out and it should of been the hospital to inform me of this information. No info given to me.
The registrar at the hospital before seeing the GP for steroids told me I had a swelling on the brain like he thought when he phoned me with my MRI results.
Is that what is is? A swelling on the brain…no it’s demyelination that might be MS. My MS nurse found it strange/odd/funny his diagnosis. He didn’t tell me I might go on to have more symptoms and I did two days later.
I was diagnosed August 2013, the neurologist didn’t tell me anything about support groups or anything like that, neither has the MS nurse. Though to be fair I think she would if I asked, but the only times I see her it’s for specific reasons and there’s rarely time to just talk, and so remember to ask about things like that.
i was diagnosed in 1992 and told to ‘go and live my life’ was told i wont say much because you wont be able to take it in seen you are so upset,they discharged me too,so i felt very abandoned and always have.
J x
mine was very similar in 1995 - “go and live a healthy life” !
I have to say my experience has been an awful lot better then everyones on here! I was diagnosed in 2005, RRMS at the time, I was given instant access to all info & care through the Walton in Liverpool, I am lucky my care is actually given by the Countess of Chester, which is a lot closer than Liverpool!! I see my MS nurse every 6 months, unless I need to see them earlier, & my consultant every 12 months. I have been given a direct line to phone them if I’m unwell. To be fair I can’t fault them. We also have an MS society office just up the road from me, which is a great help with other issues, for a rural village in North Wales, we have excellent access to all care. Glad they never said “go & enjoy your life” how patronising!!! Tracey x
I don’t think it’s changed that much, even though I was diagnosed 2010!
My consultant asked me: “Are you a fighter, Tina?”
I honestly had no idea - what had I ever had to fight?
So I hesitated slightly, before stammering: “…Ye…ee…ss”
He said: “Well you’ll be fine then!”
Tina
x
I’m waiting on the relapse that will confirm MS (oh joy - I cannot wait…) However, my Neurologist has, from the outset, advised of various help lines, the local MS Centre, this web-site/forum! and offered an MS Nurse - All prior to definite DX. I see her again in November.