I think as I was clearly oblivious to what was going on, the consultant took great care in telling me. After a referral to the spinal unit, I had a spinal MRI and was then passed on to neurology… hubby banned me from asking Dr Google.
The consultant asked me questions and did a physical exam… and that was a bit weird as I was actually embarrassed in front of my husband at all the wobbles I had! We then sat down and he put my MRI on screen, my first comment was “oh, that disc is bulging a bit” to which he responded that he wasn’t concerned about that and blew the image up in screen - he barely needed to point out the white dashes as I’d already realised that wasn’t normal!
He very calmly explained what he believed all the tests pointed to, explained some general stuff about MS and explained the next steps (brain MRI, steroids and a further appointment). My husband even said afterwards that he knew it was something serious just because of the way the Dr positioned it. He didn’t say anything about PPMS until the next appointment.
I do realise I was lucky from hearing the way quite a lot of people have been treated though. My Neuro wasn’t an MS specialist either
It’s really interesting to read peoples diagnosis experiences … here’s my two pennies…
I was driving home after a meal with my boyfriend and realised I didn’t appear to have any peripheral vision in my right eye I could only see in the dead centre, got home couldn’t raise my toothbrush to my mouth, my face fell and I lost my speech. One ambulance trip later I am on a stroke ward.
From here one Consultant discharged me with a migraine and fair play the other Consultant said no! we have an otherwise healthy 25yr old here it doesn’t make sense and I was sent for an MRI and to the eye hospital.
At the eye hospital they diagnosed me with Optic Neuritis. I had EVP tests as well which told them more.
I was called back to meet with the same Consultant that had sent me for an MRI and though he was a Stroke Consultant he told me then and there. He brought my MRI up and all over my brain there was white matter he explained this was lesions or myelin damage most likely caused by MS.
He mentioned Blackpool illuminations!!
On the centre of my brain there is a dent he explained that this also strongly indicated MS. He then went onto explain I had probably had this for about ten years and there was extensive scar tissue. Well this explained a lot looking back.
The same Consultant did my lumbar puncture which concluded the matter. He called me to his office and talked to me and my boyfriend all about MS and answered as many questions as he could. He then sent me to the care of my Neurologist who immediately sent me for DMDs.
In fact I owe that Consultant an awful lot for not just discharging me. Yet he thanked me for being a challenge for him it really bugged him that he couldn’t explain my case medically which led him to do all his investigations…
I think reading the others me and you have been lucky to - but this is the level of service we should all be able to expect as the norm ! such a shame it isn’t. As that was in 2016 I am hoping you haven’t had any progression and you are well x
Its been really interesting to read from so many of you the history of your diagnosis and how you were treated at the time. What I really want to find out is the relationship with your MS consultant after diagnosis.
So many people that i have spoken to feel that the consultant does not seem to be very interested in how they are coping with other problems that could be linked to the MS that occur after initial diagnosis.
Do you think the consultant is advising/helping you to deal with these problems. Possible drug trials, physiotherapy sessions as well as difficult problems such as bladder and, balance issues, cognitive problems etc Or maybe the consultant leaving you to resolve these issues on your own
My neuro phoned me with the good news (I think not!)
A few days afterwards went with family to an already booked Billy Connolly show. Recall sitting there watching and hearing people laughing and wondering how on earth anyone could be happy when I had just been told I had m.s.
I wonder if there is any significant difference in the way women/men are treated. Do we present differently to the neuros? Do neuros treat us differently.
As for follow up - my biggest problem has been the one of coping with the mental burden of having m.s. When I mention this it is brushed aside. I guess we all have anxieties about the future - ranging from how we may be, to how am I going to pay the mortgage, to what if the children develop m.s. (one of mine has) etc. etc.
My whinge with neuros is that they take us on THEIR terms - we are categorised into categories that are not particularly accurate - we may be offered drugs that are not guaranteed to work, drugs that may have unknown side-effects.
My diagnosis came via a GP who i have never seen before nor since. They phoned me to get me to their office and so i figured something significant was going on (like when you go a hospital to visit a sick relative and the nurses immediately offer to make you a cuppa!)
The GP had the “well at least it is not cancer” type of bedside manner, but really i didn’t need any comfort. Being a pragmatic sonofabitch i just needed to establish myself in my new reality and then get on with a game plan to defeat it (as far as possible).
To this end, my neuro has been adequately accessible and so has the MS nurse (aka pharmaceutical company representative) assigned to me. I am cold with them and they are to me; they provide me with information and options; i don’t need their sympathy. My neuro prompts me for any questions and concerns and is happy to get as technical as i can tolerate… he is all about gastrointestinal fauna health… so boring
Ultimately medicine is a science and i think it is naive to think that MS sufferers are little more than glorified lab rats!
There is so much which is unknown about the disease and the drugs dished out to treat it, i am confident that all of the MRIs, blood tests and the raft of DMDs on offer are all just elements of a massive effort to collect as much ‘real world’ data as possible. And i am perfectly okay with that.
Apologies if all of this is irrelevant (especially as none of the above took place in the UK).
"Ultimately medicine is a science and i think it is naive to think that MS sufferers are little more than glorified lab rats!
There is so much which is unknown about the disease and the drugs dished out to treat it, i am confident that all of the MRIs, blood tests and the raft of DMDs on offer are all just elements of a massive effort to collect as much ‘real world’ data as possible. And i am perfectly okay with that."
I totally agree with all of that. MS is just something the medical world is watching, and learning from the people who are diagnosed with it. Hence why none of them will recommend which dmd to use, why you are handed a half dozen colourful, glossy pharmaceutical brochures expecting you to make an informed choice. They don’t KNOW which is the right one to prescribe. All of these drugs are still in their infancy as far as I’m concerned.
Off topic a little I know. I’ll step down from my soap box now.
At my 6th month appointment after dx my consultant said I could have yearly appointments if I wished but it was up to me if I wanted to carry on seeing him. He also gave me the number of the ms nurse. I was left with the impression because I was progressive there wasn’t much point so I declined his appointments.
I really felt I was written off and it lead to some very dark thoughts which I still have. However after a couple of years I decided to get in touch with the ms nurse and just having someone to talk things through with has really helped. Around that time I found this site which has been more help than anything.
I was diagnosed over 30 years ago and my consultant told me in a great way. You have to first of all appreciate that this was at the height of the 80’s AIDS scare. After around 6 months of tests he sat me down and asked me what I thought was wrong. I told him I had been looking into it, taking all my symptoms into account, and had sort of fixated on three areas. First of all was Aids. I must admit I had not been living like a monk and had been described as willing to sleep with a warm scarf or a barbers floor. Therefore, I told him, I was worried about aids. The second thing was a brain tumour as I had been having a lot of strange “head episodes” which I could find no explanation for. The 3rd was MS. He asked which I would prefer. I told him I would prefer to avoid the whole AIDS scenario because at that time it was a death sentence. As for the brain tumour it was possible to treat it although once again there were inherent risks although, to be fair, there was a chance it would change my personality for the better. As for the MS, I told him it was something I didn’t know much about but, if given the choice, that’s the one I would choose. His reply was “congratulations, that’s what the diagnosis shows”. He read me perfectly as it was just the sort of way to tell me, rather than get all serious about it. He got to that bit over the next few months.
For me I was told I would have at least an annual review with my neuro who would oversee my treatment and regular check ins with the ms nurses. To be fair I have had quite a bit of input (not always useful) from the nurses and my neurologist was quick to get me on DMDS and meet with me. It’ll be my first year review next weekend. All the things you listed I have had discussed with me by the ms nurses. Not sure what is left for my neuro other than he oversees overall progression and DMDs. Overall I feel I’m in good hands. I’m lucky my neurologist is a leading professional in ms. Hope this answers your question a little better
My did was quite recently and was one of the coldest in sympathetic ways I think my consultant could have used, we were only perhaps in her office 10 minutes or less to be told, " yes we have done all these tests you have ppm so will see you in 12 months and I’m referring you to am ms nurse, thanks for coming"
my wife was fuming, I was just gob smacked to be honest and I’m still waiting for the ms nurse referal
As I believe I’ve said before; I was originally diagnosed as having had a stroke, then five months later they changed their minds, and it became MS (the RR variety). I think the stroke diagnosis hit me like a punch in the guts (in a sort of “you mean I’m not immortal??” way), but it was the only thing that might have made me feel better about having MS instead… it could have been so much worse! My consultant isn’t the most sympathetic or people-orientated type of bod - others seeing the same consultant agree with me, he just sees the illness, not the person, and doesn’t listen properly to you - but I just wanted to get to the bottom of these strange symptoms and go back to my old life. I had the lumbar puncture and Evoked Potential tests etc, and at the appointment for the results, I asked him straight, “So there’s oligoclonal bands showing in my spinal fluid - that indicates MS?” to which he replied brusquely “Oh yeah, it’s MS… here’s the contact details for the MS Specialist Nurse, contact her if you have any problems”… and that was about it!
It’s been an emotional rollercoaster ride. I made a full recovery when I was discharged from hospital and started a dmd more or less immediately. So I’ve got MS! No big deal, I thought. Kiss my ass. Repeat performance in September left me needing a crutch. Last April, almost a year after diagnosis I needed a wheelchair for any distance. By December just gone I can only manage to shuffle indoors and have to use the wheelchair outdoors always.
I have cried with frustration when I can’t manage to put my socks on, I have sobbed with fear for the future, I’ve psyched myself up with a good talking to, I’ve spent hours searching for answers on the internet in the small hours when I can’t sleep. I think acceptance is something I’ll never attain.
I am posting for my Daughter. She was diagnosed with MS by her neurosurgeon in London in June being told that she has, according to her MRI scans, been suffering since a teenager. She recently attended an MS Clinic and despite there being spots on both her brain and spine MRIs the MS Consultant has said that she doesn’t have MS. She is a mother of 4 year old twins, her husband has cancer and she doesn’t know what is going on. She has complete numbness, walks funny if she has a relapse and is generally unwell.
I am now 66, it took over 10 years to get diagnosed, my first major for me symptom going blind in one eye twice in 2000 which was dismissed by my GP at the time as the heat or low blood pressure, so i wasnt even given an appointment with neuro. skip to 2006 many weird things later changed my doctor, who immediately realised i had a neurological disorder and sent me to neuro. We stayed together for 10 years he worked hard to get me a diagnosis which finally came in February 2016 and he told me PPMS and was sorry it took so long but protocols etc etc. I was sent to different people pain clinic, physio etc, non of whom could really help me. An MS NURSE who left before she could see me.
Now i deal with it all on my own, i have never seen my neuro since the day i was diagnosed, nor has he contacted me for a follow up.
Its like well you have PPMS glad i finally managed to tell you what it was, have a good life what is left of it ciao.
Lucky for me, my medical centre have empathy for me, and they look after me, well my one doctor but she retired, so now i am seeing a new younger one, who is more active and keeping a better eye on me.
I do feel a bit lost to be honest. At the moment I am having issues with my eyes again, my left one hurts when i move it, and my right one is constantly twitching. My eye is blurry and i feel rubbish. I had same symptoms back in 2004, also have had 3 positive VEP tests. I cant be bothered to talk to my GP about it, i dont want to go back to neuro to be honest as it just brings back bad memories of constant symptoms being ignored, and struggling all the time to find out why i was so ill all the time.
I honestly think the neuros have way too many patients to see and once they give you a diagnosis and it isnt life threatening as my neuro told me they go on to the next person.
I have another disease called transient epileptic amnesia, was put on special tablets for it, been on them now for over a year and havent been called in for a reassessment of that lol…or maybe i forgot ha ha.
Neuros well I loved mine to be fair he treated me with a lot of respect especially when i saw him a lot privately, but i know he is busy and well i can take care of myself i mean what can they do for me anyway nothing. But i do know a few people who were diagnosed and never saw a neuro again.
