I was very pleased with my CIS diagnosis just over a month ago, after 9 months of diagnostic testing and symptoms. Now, after speaking to a few MSers in the US, I’m told that I would fit the diagnostic criteria for MS if I lived over there (at least four lesions confirms MS) and would be receiving treatment by now.
They’re advising me to seek a second opinion (my CIS diagnosis came from an NHS MS specialist neuro, who I was referred to by a stroke specialist who saw me initially).
My story so far:
- Four brain lesions
- Symptoms: numbness and tingling lower left body from the ribs down, and right foot. Hand tremors, fatigue, balance issues and difficulty walking.
- Lumbar puncture positive - confirmed oligoclonal bands
- VEP test negative.
In my position, would you seek a second opinion? I feel almost completely better now, and am just dealing with a bit of fatigue now and then. The idea of treatment is scary, but if it delays the onset of MS then I’m all for it. I just don’t know who to trust.
Thanks,
Goose.
That’s a tricky one. There is certainly at least one person on here who has talked about receiving DMDs in the UK even through his/her (her, I think) CIS has not yet been officially promoted to MS, but I can’t remember who she is and how exceptional her circumstances.
In my day (back when the the term CIS hadn’t been invented) my neurologist said ‘there’s no such thing as single sclerosis’ and the drill was to wait and see. I didn’t have to wait long and neither will you if there turns out to be a very active disease process at work. And if there doesn’t, would you want to have been moving heaven and earth to get yourself onto heavy-duty drugs that are by no means without their drawbacks? There are no risk-free options. (By the way, I speak as someone who was on Avonex for 10 years and has been on Tysabri for 5 and am extremely grateful for both. I got on a DMD as soon as I possibly could after dx. But not before.)
It’s your decision, of course. For what it’s worth, in your shoes I would be standing back, drawing breath and letting the thing play out for a bit. You have a lot on your plate at the moment and a lot to digest. Sometimes stepping back and taking stock has its benefits. Life is long, D.V., and you have the rest of your life to have MS in, if that is what you turn out to have. It that’s what you have got, it will find you without you having to chase after it.
Alison
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Hello
Alison may be thinking of me. It is possible to diagnose MS off of a single MRI and single clinical episode if that MRI shows dissemination in space/time. Space is shown by the location of the lesions. Time can be shown by simultaneously enhancing ( with contrast) and non enhancing lesions on the same MRI. (Enhanced lesions are active, dull ones are old).
In the UK diagnosis of CIS gives you access to moderately effective DMDs. A diagnosis of RRMS doesn’t change the choice of available drugs unless the RRMS is “active” - this requires evidence (MRI or clinical) of progression over two years (eg new lesions or relapses). If you are active the more effective drugs may be available. I have had one mild clinical episode (numb toes in late February when this diagnosis path started) but from my MRI could be diagnosed MS under updated criteria. As I have only had one clinical episode I’m left diagnosed as CIS for now but am due an MRI next month to see whether I can be diagnosed “active” RRMS - in which case the game plan, which my neuro is supportive of, is to jump straight for Lemtrada. If I am not “active” then regardless of whether my diagnosis is upgraded to MS Or remains CIS I will be looking to start one of the moderately effective DMDs ASAP (as that is all that will be available at that stage’).
hope that helps?
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Hi Alison, thank you for your reply. What you said about moving heaven and earth to get onto heavy treatment…this is exactly where the dilemma lies. If it’s not necessary then I definitely don’t want to do it, and have expressed that to my neurologist (with his agreement). The trouble is, when I found the diagnostic criteria can differ in this case, I wondered if his was the right opinion to seek!
For the first time in almost a year I’ve found myself happy to sit back and just let it play out. The symptoms are 90% gone (I’m just left with fatigue now and then) so I’m happy to carry on without treatment. If there’s active inflammation then it will show itself eventually. That doesn’t stop me second-guessing every numb limb or blurry eye, but I suppose that will never go away!
I hope tysabri is going well for you, and continues to 
Lucy
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So much useful info, thank you!
I was never offered an MRI with contrast; the first push was for a LP and then the wait for an MS specialist neuro took so long that my symptoms had pretty much gone by the time I saw him. The first one specialised in strokes. Maybe I should’ve requested one, I’m not sure. At this point nothing is due until an annual review.
The 2nd neuro did mention DMDs as treatment for MS, but said it isn’t necessary for me at this point, and he wouldn’t recommend it. I agreed, and still do, but I suppose the jury is out about me having any active lesions.
The neuros I saw disagreed on my migraines and tachycardia being caused by lesions, and these began a few months after the initial symptoms. I just find it so hard to say to a specialist consultant “who’s right here? Shouldn’t you do another MRI just to be sure?” and not feel like a hypochondriac/pain in the a**!
I suppose my end ‘goal’ is to know what is going on in my brain, but I don’t know how entitled I am to find out in the detail I would like. The only way is probably to ask, but I’m more likely to wait until I feel unwell or have a symptom before I do.
I think I’ve been super lucky in that the initial (non- MS specialist) neurologist I saw ordered a full CNS scan with contrast and then referred me straight away to a specialist MS neuro who then ordered a follow up scan 3 months after the first to see if I was active.
I can also understand why, if symptoms are light, you might not want to rock the boat with DMDs with serious side effects. So far I’ve had a week of numb toes (from which I’m now fully recovered). However, I do have numerous lesions (brain, brain stem, all most all sections of c-spine and a few on t-spine (described as non- elegant due to the lack of clinical symptoms). The fear of new lesions on my already battered CNS which could have severe symptoms and increased progressive damage as a result out weighs my fear of DMD side effects so I want to hit it hard and fast. Doing nothing is also at odds with my general approach to life / personality - I’m a bit of a control freak and am finding even the comparatively limited wait times I’ve had through diagnosis difficult. But I can understand why other people may feel different.
Hope you get the answers (and any treatment) you want. Xxx
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Katy, with the information you have about lots of lesions, I would certainly have felt the same - when MS clearly has your CNS firmly in its sights and in range, you want to put a stopper on its fire before it gets better at the pinpoint accuracy!
Alison
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From what I have experienced (have RRMS) you can request a second MRI scan six months after your first/initial MRI scan. The second scan should be done with contrast so they can compare it to your first scan. They do not usually give contrast with the first MRI scan as there is no previous scan to compare it to. Contrast will enhance lesions that are up to a month old or reactivated old lesions. I have had old lesions that have enhanced with contrast before.
Even if there have been no new symptoms after the first scan there still can be silent new lesions. A follow up scan could show these lesions. If there are new lesions on the scan then a diagnosis of MS could be made.
Hello;
i would push for a 2nd MRI- I was quite lucky that I had a 2nd set of symptoms 4 months after first around the time of my lumbar puncture, so when lumbar picture came back positive, I reminded neuro of new symptoms, and he ordered new MRI, which showed new leisons, and thus MS diagnosis.
#1 NHS tip- don’t assume they are going to do the hard work for you- know your patient rights and have a look at NICE MS diagnosis guidelines
My understanding (and could be wrong as so new to this) is that you don’t need an earlier scan to make contrast worth while. It shows up active lesions as appearing different to non active ones on the same scan - so you can see old non active lesions against active ones in a single scan. The stickie at the top of the board explains this well ( and is very much my current understanding from my neuro). Don’t know how common it is to get contrast on a first MRI - but wanted to say so others can push for it on a first scan. It has certainly been helpful for me. K
I had no contrast with my first MRI scan (brain and C-spine), I was informed by different medical professionals that is normal procedure. I had multiple lesions in on this scan. Contrast was not discussed.
The radiographer was keen for me to have contrast for the second scan six months later. They first did some pictures without contrast then I was given contrast to check for active lesions. I had more lesions on these scans.
The Barts MS Blog has some useful information. A post from Feb 2016. New MRI criteria for diagnosis of MS.
http://multiple-sclerosis-research.blogspot.com/2016/02/new-mri-criteria-for-diagnosis-of-ms.html
Agree with tip #1 re. NHS. In addition to the NICE guidance I have found the ABN guidelines on treating MS helpful along with the MS Society summary of the diagnostic criteria (link below, hopefully…)
Xx