Hi all, I’ve posted previously when I was first experiencing symptoms and having tests. Currently I’m a year on from the start of my symptoms and so far I’ve had an MRI that showed one non-enhancing lesion in my neck, a lumbar puncture that was positive for oligoclonal bands and a diagnosis of CIS with the plan to continue monitoring my situation as my neurologist thinks it’s extremely likely that this is the start of MS (and I’m still experiencing the effects of the symptoms a year on, although the severity varies). I had another MRI in March and have unfortunately had to wait until today for the results due to several cock ups at the hospital! My neurologist has sent an extremely short letter (4 sentences!) which states that the radiologist has compared my scan from August with my scan from March and “the current imaging demonstrates two discrete non-enhancing lesions in the spinal cord in your neck and no abnormality in the brain. The appearances are unchanged from your previous scans.” I’m very confused as I was definitely told I had just one lesion after my first scan (I’ve found the letter to my GP to double check!) so I’m unclear about how the new scan can be unchanged, unless the person who reviewed my first scan got it wrong. I’m due to see my neurologist on Thursday so hopefully I’ll get some definitive answers then but in the meantime I’m really frustrated and disappointed by the lack of clarity and am hoping someone may be able to offer some advice about what two lesions may mean? I’ve tried reading the updated McDonald criteria again and it’s not the easiest for me to understand (lots of ifs and buts!) but the summary of the criteria on the MS Trust website said that more than one lesion + oligoclonal bands = a diagnosis. Are there any instances where two discrete lesions wouldn’t lead to a diagnosis? I’m trying to make sense of something that makes no sense at all to stop me from going mad before Thursday! I was actually hoping that the letter would confirm a diagnosis of MS as I’m tired of waiting and just want to give it a name and get on with it, so I’m still hopeful that the two lesions are enough for a diagnosis! Any advice anyone can offer to help me feel more in control of the situation would be greatly appreciated Sarah
You’ve been through the wars this last year, not fun, I hope that you get an diagnosis on Thursday, not a brush off and say they want more tests or that they are waiting for another relapse before telling you that you have MS.
If you have read a few threads on here you will see that it has taken years in some cases to get diagnosed. Maybe they can give you something to help with the symptoms. I had a MRI in August and I was hoping for another one in January but I didn’t, so I don’t know if they will repeat the tests for next year when I see the neurologist again.
Good luck on Thursday.
Thanks Kay the waiting isn’t fun, is it?! Mostly I can cope with it, but around the time that results are due I keep hoping that this time will be the time that they’ll finally be able to diagnose me…and then it never is, and I patiently wait several more months!
I was prepared for the results this time to either be a diagnosis or no change, but I’ve been really thrown by the fact they’re saying there’s no change when what they’re reporting now is different to what was reported before.
Thursday feels very far away at the moment!
Hi,I’m in a similar-ish position to you in that i find the McDonald criteria very difficult to understand as there are so many variables which seem to be applied differently by different neurologists. I started with trigeminal neuralgia. Have had at least four areas of lesions on my brain from the MRI I had in Jan. I have a positive lumbar puncture result. My neurologist hasn’t diagnosed me but has referred me to the specialist MS team in my area and has put me on very strong steroids usually used in cases of MS. I’m hoping that when I see the MS neurologist that they diagnose with the results of my tests but who knows. I feel your pain
I’m glad it’s not just me that finds the McDonald criteria confusing! I found a downloadable version last night that shows the old criteria with the additions from 2017 in a different colour and it made it easier to understand, but according to that we should both have an MS diagnosis so I think you’re right about different neurologists reading it differently!
Sorry that you’re having a rough time of it as well - I hope you get the news you want when you see the specialist
I suspect that the neurologists all read different things into the McDonald Criteria. Some people seem to be diagnosed with less clinical evidence than others.
It is very frustrating to have something so clearcut as the McDonald Criteria appears, yet is read very differently by various neurologists.
I suspect you’ll have to go to your appointment on Thursday Sarah with a print out of the McDonald Criteria and ask the neurologist very directly whether your symptoms plus clinical evidence does in fact equal MS. Also, why there appears to have been a different number of lesions found in the latest MRI yet ‘no change’ reported!!
Best of luck for Thursday.
Thanks Sue I’ve already downloaded the criteria information to my phone (although may take your advice and print a copy as well to make my research look more thorough!) and have made sure I have the letter with my original scan results in my bag ready so I can provide evidence about what I was told before and politely demand answers! He normally sends extremely detailed letters (not including yesterday’s four sentence one!) but is incredibly vague in person so I’ll have my work cut out pinning him down on specifics but it’s important I do because currently not much is making sense and the next steps he gives aren’t always clear.
As if this process isn’t drawn out and stressful enough, having results lost/delayed and having to regularly chase up letters and appointments really isn’t helpful! I might remind him of that if he once again tells me the only treatment currently is to pace myself and avoid stress haha!
I had my appointment today and came out with a diagnosis of MS! Hurray!
Sue - thank you so much for recommending I take the criteria with me and to directly ask about it. He told me that me having two lesions rather than one was because “he’s not an expert in reading MRIs” but said that an extra lesion doesn’t change anything. I then quoted the McDonald criteria and asked what more I need to make me eligible for a diagnosis as two lesions and oligoclonal bands are enough on the criteria and he said “we can do a lumbar puncture then if that’s what you want” and looked very flustered when I reminded him I’d already had one and it was positive!
It was a really difficult appointment actually - apart from not remembering who I was and forgetting my previous results, he then lectured me about how people think a diagnosis will open them up to a world of treatment and medication that will cure them, but MS can’t be cured and rushing a diagnosis for the sake of a medication that isn’t proven to do anything anyway isn’t worth it. I’m not sure how but I managed to very calmly and politely say “I’m not actually interested in a diagnosis because of medication, I’m interested because I’d like to know what’s wrong with me and be able to deal with it and move forward” which made him soften slightly and he said “oh yes, of course, of course!”
It turns out he’s “old fashioned” as he puts it and doesn’t agree with the additions to the McDonald criteria as, while he strongly feels I have MS, he doesn’t believe there is sufficient definitive clinical evidence yet and he’d prefer to wait until I have more lesions/another attack - however, he “will agree to call it MS” when he writes to my GP. He was so vague when he was going on about everything that I actually had to stop him and ask whether he was actually giving me a diagnosis or not - and it appears he begrudgingly is.
He’s asked me to look into the one medication that I’m eligible for but I got the strong impression he doesn’t think I should take it, and he said an MS nurse will be in touch with me soon, and he’ll see me again in the autumn.
I was hoping to feel more relieved than this but the way he spoke to me and the fact I seemed to be doing all the work (he didn’t even ask how I’d been and how my symptoms were/if anything had changed since I saw him in January) has made me really annoyed and detracted from the “moment” I’d been imagining! I asked when/how my symptoms will get better as they’re still so up and down and he changed from “with time they’ll go away” at my last appointment to “they may never get better and you need to learn how to manage them”…so apparently once he gives a diagnosis he loses all hope and sympathy!!
Sorry for the rant but I really want to get it off my chest so I can move on and focus on having my diagnosis and getting support from the MS nurse with how to manage it!
You can rant here, well at least you know where you stand now. I’m sorry that you have MS ,hopefully you may get some help and I am sure that the members on here could give you a lot of advice at what can happen next. I can understand the feeling that you don’t want to have this disease but pleased that you finally know that you are not going mad with all of your symptoms.
If you have read a lot of posts here you will know that having a MS nurse to rely on is golden.
All the best. Kay
Hi - Sarah your story has actually helped me quite a lot. I had an original diagnosis made by a private Neurologist who also does NHS work of Primary Progressive, my next appointment was with an NHS Neurologist who verbally diagnosed Secondary - told me I need to inform DVLA but then also said I need a lumbar Puncture (which I had on Tuesday) - he then helpfully (not!) pointed out that there are a lot of really sick and unwell people out there and I must not get too hung up on labels…I have had over 20 years of symptoms after being dismissed in my 30’s by an elderly Neurologist who simply got me to touch my nose and stand on one leg…I cannot WAIT to find out what the LP shows and I really really hope (like all of us on here) that I can then just get on with my life once I know what the hell I’m dealing with. I have also got significant issues with my joints for which I am under yet another Consultant ( and there is the bowel Consultant too, oh and the Urology one musn’t forget him!) I used to get annoyed by patronizing medical staff but thankfully I have now got to a stage in life where I just sit and listen to them and count the minutes until I can get the hell out of their office! I know they mean well and I do respect that they have worked hard to get where they are etc (let’s face it when you have a Lumbar Puncture you definitely do need to feel that the person doing it was listening in class lol! )
ps I haven’t informed DVLA yet - inform them of what?
What a buggeration of an appointment / neurologist!
Sorry, but that just makes me want to slap the old fool.
If you have active MS (congratulations by the way on actually getting him to acknowledge that!), then you definitely qualify for more than ‘one medication’. I assume by that he means one disease modifying drug (DMD)?
Have a look at the MS Trusts Decision Aid: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid at the very least, you should qualify for all of category 1.1 plus Tecfidera. The prescribing criteria is set by the National Institute for Clinical Excellence (NICE - even though they aren’t very nice really!) Their guidelines for prescribing such drugs are here: Products - Multiple sclerosis | Topic | NICE It requires a bit of picking apart to see what they mean, but essentially, the guidance is that if you have active relapsing remitting MS and have had at least two relapses in the last two years, then you qualify for the drugs to prevent relapses as detailed on the MS Trust Decision Aid.
If you qualify for one drug, then I would presume that you actually qualify for more than one drug. He has after all diagnosed you with MS rather than CIS (even CIS gives you three DMDs to choose from!)
In your position, I would actually see if there is an MS specialist neurologist in your NHS trust to whom you could be referred. Your current old-fashioned neurologist might not want to refer you to someone a bit more up to date but honestly, that’s what you need. Someone who is prepared, if necessary, to stretch the guidelines and who actually can remember who you are and what conversations you’ve had in the past.
If you look at your nearby hospitals that are part of your local NHS service, have a look at all the neurologists and see if any of them are MS specialists (the information should be on the hospitals website). Then talk to your GP about referring you to someone different. If that’s not possible, then maybe there’s a specialist in a nearby hospital to whom you could be referred by your current neurologist. (This is actually the arrangement that exists in my area: Coastal West Sussex CCG - many people are referred to a neighbouring hospital where there is a full MS service including several neurologists, MS nurses and the full gamut of DMDs.)
If you decide to and have found a neurologist who would actually suit your needs better, I might write to the neurologist you currently see, copy your GP and maybe MS nurse in (and possibly the preferred doctor) and directly request a referral elsewhere. You could phone and speak to the secretary of the neurologist you’d like to see first, to find out if this might be possible.
I know you’ve said its the diagnosis that you wanted rather than access to the panoply of drugs, but trying to prevent further relapses is surely the aim, rather than waiting for another relapse to give you access to more options?
Thanks Kay - it sounds mad but at this point I really do just feel relief because I’d already prepared myself for it being MS and knew there was never going to be a return to being “normal”, so now I have the diagnosis there’s no grieving process or shock or anger as I’ve done all that, now it’s just me feeling positive about the fact that I’m now eligible for better support and can give it a name.
I’ve seen people mention how incredibly wonderful the MS nurses are so I’m really looking forward to meeting mine!
It sounds like you’ve had a lot of confusing and contradictory advice - no wonder you just want a definitive answer! I really hope the lumbar puncture provides more answers and enables someone to tell you what’s happening and where you go from here.
I’m used to medical/clinical staff being a bit patronising but I was a bit taken aback by the rants my neurologist has gone on in my last two appointments after he’s misunderstood my questions and feels I need to be set straight about things! Both times my questions were very clear and he went off on a tangent with his rant so I’m guessing all the qualifications in the world can’t make you a good listener!
I’d say you have nothing to inform the DVLA of until you get a formal diagnosis - I’m pretty sure they don’t need to hear about maybes!
Good luck with your results
I’m glad you concur about what a prat he was!!
Unfortunately he is an MS specialist neurologist - he works for the NHS but also works privately at a local hospital (where I first encountered him before he transferred me to his NHS clinic) and he also works privately for Kings College Hospital and appears to be extremely well qualified - which is why I had no qualms about taking everything he said at face value previously as he seemed to have my best interests at heart and, although he was very vague and refused to answer certain questions, he seemed caring and empathetic.
You make a good point though (as ever!) - my husband asked me yesterday if I could change neurologists but I wasn’t sure how/if it was possible (I hate rocking the boat - which is why getting a diagnosis out of him was particularly challenging!). I’m under an NHS Trust that has two sites and the one I’m with is further from home, so I’ve just had a look at my local hospital but unfortunately they don’t have any MS specialists. There are two other MS specialists at the hospital I’m with but I’m a little hesitant about asking to move within the same site. I think I might have a chat with my MS nurse when she gets in touch and sound her out about the different neurologists and get her advice about whether to move (and ask for her support doing so!).
Thank you so much for all the information about medication - I’ll definitely be taking a look I may have sounded like I didn’t want any DMDs which isn’t the case - it was more that I was trying to make it clear to my neurologist that DMDs weren’t the primary force driving my wish for a diagnosis. Also, thinking back to my previous appointment before this one, he made it very clear that I wouldn’t be able to get access to any DMDs until I had a formal diagnosis of MS, and that he was in no hurry to diagnose because any DMDs I’d be eligible for after diagnosis would have such horrible side effects that they wouldn’t be worth taking. At that point he said he would upgrade my diagnosis to “CIS with oligoclonal bands” and would await further clinical evidence before diagnosing. Yesterday’s appointment has made it even clearer that he doesn’t value DMDs at all and he sees them as a waste of time as there’s no evidence to suggest they’d make me any less disabled in the future anyway - which is clearly not the right viewpoint to have!!
The DMD he said I would be eligible for currently is Copaxone and he asked me to look it up on an MS decisions website (I can’t remember the web address but I’ve got it written down!) but again, he seemed to be suggesting that I shouldn’t have it. I’ll read all about it and also use your links to find out what I’m actually eligible for and can have access to in my area so that I can start making informed decisions rather than taking his word for it.
I suspect you may get a more reasoned approach from your MS nurse. I bloody hope so anyway.
Copaxone is in fact a decent level one drug. (It’s actually the one I’m about to restart!) I do see the point about DMDs all having potential bad side effects. But it’s all a balance - risk of side effects versus relapses.
My experience ought to a) make people frightened of DMDs and b) make people frightened of life without DMDs.
I’ve had 4 DMDs and had nasty side effects from 3 of them. The one I didn’t have bad side effects from was Copaxone! Which I stopped because I thought it wasn’t working anymore and I was relapsing despite it.
But in my 22 years, I’ve had about 5 years on Copaxone and the other 17 years with either a failed DMD, or no DMD at all. And I am quite badly disabled by the relapses I’ve had. Although I spent about 10 years without much protection from DMDs, I was pretty much spared from bad relapse. But then in 2012 I had a real humdinger of a relapse and haven’t walked much since. I also have significant problems with my hands, my cognitive abilities, my bowel and bladder.
So from my experience, it’s better to be on a DMD than not. You should have options other than Copaxone (while it’s a good drug, it is not your only choice, you should be given other choices). There are MS specialists at Kings who believe in DMDs. (For a few months I had Tysabri there. Although that wouldn’t be an option open to you - it’s only given to people who’ve ‘failed’ other drugs.)
When you get your MS nuts, talk to him/her about your neurologist, your diagnosis and what drugs you might realistically have the option of.
All the best Sarah. Take from this week the positive that is you’ve actually been diagnosed. No more limbo for you. I know it’s a negative to take positivity from, but it’s common to have the same feeling.
Thank you for sharing your experiences of DMDs with me - it’s really helpful to hear how other people feel about things as a starting point before I dive into my own research. I’m sorry that your journey has been so full of ups and downs but I’m really pleased that you channel all that experience and wisdom into supporting the rest of us
It’s good that Copaxone appears to be one of the good ones! I know very little about DMDs yet as I didn’t want to get ahead of myself until I had a diagnosis, but I think I’ll allow myself a few days to let everything sink in and settle, and then I’ll begin all the research so I’m ready for when I hear from the MS nurse.
The really intriguing thing about the way my neurologist has spoken to me about DMDs is that he seems incredibly focused on how things are currently without any thought of potential future effects (which is surely the whole point of them?!) - so when he told me previously that he wasn’t in a hurry because DMDs have side effects, his reasoning was that if it is MS, it appears to be quite “mild” (my symptoms have a big impact on my day to day life, mainly mobility-wise, but I’m fortunate to never have been hospitalised and I’m not in pain) so taking a DMD now wouldn’t be worth it because the side effects would be worse than my current symptoms. So either he’s looked into his crystal ball and he thinks my future relapses won’t be particularly bad, or he doesn’t think the side effects are worth it because they’ll make things worse now and in his opinion won’t even have any impact on reducing/delaying future relapses.
I’m really looking forward to learning about DMDs so I can cobble together a good working knowledge and use that to help inform my choices once I start asking the MS nurse for advice - but I’ll wait until I have the energy to absorb the information!
Thank you for your well wishes - I really do feel very fortunate to have got my diagnosis and like a weight’s been lifted. A colleague asked me earlier how my appointment had gone and I said “yes, good - I got my diagnosis!” and she replied “oh…you sound…too cheerful?!” But it really does feel like a fresh start and the beginning of something positive (obviously I’d prefer to never have started this journey at all!) - and now I can move onto the next stage and start kicking MS’s butt before it gets a proper hold on me!
P.S. I very much enjoyed your typo - “when you get your MS nuts” - at first I genuinely thought you were referring to me arming myself with knowledge and then growing the balls to challenge my neurologist on his thinking haha! Although that sounds like a good idea as well!
Either an MS nurse or some MS balls, either would be good (predictive text is great sometimes!) you may need the nuts to deal with your ‘out of the dark ages’ neurologist!
While you are researching MS drug therapies, you could have a look at the Barts Blog: https://multiple-sclerosis-research.org which is excellent and utterly reputable. The main man behind the Blog is Professor Gavin Giovannoni - possibly the best MS neurologist in this country (Europe/the world?). Also try the forum at https://shift.ms/ These two are completely different, shift.ms is full of personal posts mainly about disease modifying drugs. So for basic info about the DMDs available, go to the MS Trust Decision Aid, for more detailed information, try the Barts Blog and for personal experience, use this forum, or the shift.ms forum. On that site you’ll find posts about specific DMDs in separate sections, so it’s easy to look at what people on the various drugs think about them.
Thank you so much - I love getting as much detail as possible so knowing there are resources that will each give me a slightly different perspective is amazing. I’ll be checking out everything you’ve suggested as soon as I have the energy to tackle it all!