Can someone clarify the McDonald criteria for me. I saw that on clinical presentation you must have had 2 or more attacks and 2 or more objective clinical lesions. I understand the attacks part but does the clinical lesions means evidence of lesions by symptoms such as Babinski sign etc? Last time I saw the neurologist I had the babinski sign, brisk reflexes and spasticity on top of the tingling and burning sensations. Did that just show evidence of 1 clinical lesion? When I saw her I was experiencing my second attack of symptoms. Bloods were normal and MRI was reported normal but quality not good of spine. Also even though it was reported normal could that still mean there were lesions? I’ve heard about MRI reports saying things were normal even though there were several lesions. Also what happens if the MRI comes back normal again? Where do I go from there? I will not consent to a lumbar. If my neurologist appointment shows something else will I get diagnosed with M.S or at least treated or will I just be shrugged off with a different diagnosis or just be left to get on with it like I have been so far. A 24 year old woman who was previously active and healthy who suddenly develops constant pains, muscle twitches, fatigue and stiffness isn’t normal. I’ve been like this over 2 years since I was 22. I’m so scared I’m just going to be one of those people who never find out what is actually wrong and end up suffering more because of it.
I’m not sure I can answer all your questions/points very well, but I will have a go. Please note that I am not a neurologist!
Can someone clarify the McDonald criteria for me. Please see later - I’ve copied an old post of mine that explains the criteria. It’s not completely straightforward, but it’s easier to follow than the original paper!
I understand the attacks part but does the clinical lesions means evidence of lesions by symptoms such as Babinski sign etc? Yes. A clinical lesion is an abnormal response to something in the clinical examination.
Last time I saw the neurologist I had the babinski sign, brisk reflexes and spasticity on top of the tingling and burning sensations. Did that just show evidence of 1 clinical lesion? Babinski’s sign means damage to the upper motor neuron - in other words, a spinal lesion that is affecting the signals coming from the brain to the muscles. What the reflexes meant depends on which reflex was brisk. Tingling & burning is consistent with a spinal lesion. Overall, I would guess that there was evidence of at least 1 clinical lesion.
MRI was reported normal but quality not good of spine. Also even though it was reported normal could that still mean there were lesions? The simple answer is yes, a normal MRI scan only means that there were no visible abnormalities. There are two main problems with this. Firstly, the standard NHS MRI settings don’t allow small abnormalities to be detected. Secondly, there is more than one process at work in MS and some of these are too microscopic to be detected on MRI.
I’ve heard about MRI reports saying things were normal even though there were several lesions. Some lesions are nothing to worry about or are caused by something that isn’t a “condition”, e.g. lesions caused by age and smoking. Sometimes lesions are “non specific.” This basically means that they do not fit with a known condition. The radiologist makes this decision based on the lesions’ size, shape and location. Very often people with non specific lesions will be discharged and told to come back if something else happens.
Also what happens if the MRI comes back normal again? Where do I go from there? This is something that I really can’t answer. What happens depends almost entirely on your neuro. Some keep people on; some discharge them; some will diagnose regardless. Refusing an LP rather ties the neuro’s hands. Yes, the authors of the McDonald criteria state that a diagnosis can be made without MRI and LP, but they also state that, if these tests are done and are negative, neuros should proceed very cautiously. If you only have a negative MRI and no other positive “objective” tests, then most neuros just won’t diagnose MS. Of course, the other possibility is that it isn’t MS. In this case, you really need to push your neuro for guidance on where to go from here. Could it be neuromuscular? Could it be genetic? Could it be metabolic? Try and get a referral from the neuro, or at least a recommendation to take to your GP for a referral.
If my neurologist appointment shows something else will I get diagnosed with M.S or at least treated or will I just be shrugged off with a different diagnosis or just be left to get on with it like I have been so far. I am guessing that you mean something new in the clinical examination? I have had one clinical exam from neuros in my 14 years of dealing with them and I don’t think that’s all that uncommon. So, I’m not sure that you will have another clinical exam. If you do, I doubt very much that anything new will result in a diagnosis because we still have that problem of a lack of “objective evidence”. If the neuro is considering diagnosing you despite the MRI, then he might do another exam, in which case new evidence might convince him, but I wouldn’t bank on this. Yes, you might get shrugged off with a different diagnosis, but if this happens you need to ask the neuro if your clinical exam results fit with the diagnosis. If they do, then that diagnosis might be right after all! If you are told you are being discharged, you need to ask the same question and if the neuro does not believe that your symptoms are neurological in origin. If the neuro says that your symptoms are not neurological in origin, you need to push for a referral elsewhere / guidance (as above).
Here is the copy of the old post that used to be a sort of “sticky” on the old forum. For anyone who’s reading and doesn’t already know: dissemination in space basically means more than one part of the central nervous system (CNS; the brain and spinal cord) is affected, e.g. eyes and legs, and dissemination in time means more than one attack.
IMPORTANT CHANGES TO McDONALD CRITERIA FOR DIAGNOSING MS
Some changes have been approved to the revised McDonald criteria for diagnosing MS.
THESE ARE VERY RELEVANT FOR ANYONE IN LIMBO!!!
Basically, there still needs to be dissemination in time and in space, but the number of lesions required to get a diagnosis has been reduced massively and they will now accept evidence of previous attacks (even if this is the patient’s own recollection!).
Here is the official stuff:
Immediate diagnosis of MS if you have had: 2 attacks and there is objective clinical evidence of at least 2 lesions OR objective clinical evidence of 1 lesion with reasonable historical evidence of a prior attack. (MRI, LP, VEPs etc are still not required, as is the previous version, but most neuros will do it anyway I would guess. “Reasonable” means that they may accept patient’s own report of previous attacks.)
When someone satisfies dissemination in time, but not space, i.e. if you have had at least 2 attacks and there is objective clinical evidence of 1 lesion. Diagnosis of MS when dissemination in space is demonstrated by: more than 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord) OR a further clinical attack implicating a different CNS site.
When someone satisfies dissemination in space, but not time: i.e. if you have had at least 1 attack and there is objective clinical evidence of at least 2 lesions. Diagnosis of MS when dissemination in time is demonstrated by: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or a new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or a second clinical attack.
When someone satisfies neither dissemination in time nor space, i.e. if you have had 1 attack and there is objective clinical evidence of 1 lesion. Diagnosis of clinically isolated syndrome (CIS). Diagnosis of MS when dissemination in space and time is demonstrated by:
- At least 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord) or a second clinical attacka implicating a different CNS site; AND
- Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or a second clinical attack.
Diagnosis of PPMS when there is 1 year of disease progression (retrospectively or prospectively determined) plus 2 of 3 of the following criteria:
- Evidence for dissemination in space in the brain based on at least 1 T2 lesion in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions.
- Evidence for dissemination in space in the spinal cord based on at least 2 T2 lesions in the cord.
- Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index) [i.e. positive LP].
I’ll try and answer questions if anyone has any, but you can google Polman et al. “Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria”. ANN NEUROL 2011;69:292–302.
The paper is free to download.
THIS IS EXCITING NEWS FOR ANYONE IN LIMBO!!!
What does that mean for you? From what you’ve said, you have had two attacks and evidence of one clinical lesion, but this is not supported by “objective evidence” (i.e. MRI, LP, VEPs, etc). The best we can do from there is probable MS. If the neuro is willing to ignore the MRI results and found evidence of more than one lesion in the exam then it’s possible that he/she will diagnose MS, but not many neuros are willing to stick their necks out like this. The big missing in all this is the lack of a decent spinal scan (especially given your spinal symptoms). If the neuro is sitting on the fence, then I suggest that you bring this up! The lack of an LP is a limitation though. If your LP was positive, the neuro would be much more likely to ignore the MRI. Would you consent to it under sedation perhaps? So you didn’t know anything about it?
I hope I’ve covered everything, but if I haven’t or something doesn’t make sense - fire away! I’ll be back on here again in the morning
Sorry I’m on my fourth attack now. I must have missed that out. How would a spinal under sedation be carried out? I would be more likely to consent to one if I was unaware of the procedure being carried out. Would I still feel the needle? I’m a huge worrier when it comes to possible side effects and also I dislike the whole scratch pain associated with needles. I’ve had several fairly traumatic blood tests so a needle in my back is a lot worse. I’ve had two natural home births because of my fear of needles. That type of pain I can deal with but needles I can’t. My grandfather has M.S and my father’s cousin has muscle and walking problems but had no diagnosis last time we heard from him over 10 years ago (both in a wheelchair.) The rest of my family medical history is unknown. My mother was adopted and my father’s mother walked out when he was a baby so there are not many clues as to what is wrong.
My previous neurological examination was over 18 months ago and my symptoms are a lot worse and I’ve had new symptoms in that time. My eyes were fine when I saw her but I did have an episode of pain at the back of my eyes a couple of weeks ago during this attack which has lasted 12 weeks so far. My neurologist appointment is in just over 3 weeks time. From the McDonald criteria it looks like I was only one clinical lesion away from the M.S diagnosis then which explains why I was told probable M.S.
Sedation normally means that you are semi-awake, but tend to sleep through everything plus you don’t remember a thing afterwards. I guess the trick would be giving you pills instead of an injection though. I’ve only ever had sedation via injection, but I’ve never asked for pills instead so I don’t know if it’s possible or not. It has to be worth asking about, if the neuro is unsure there is sufficient evidence.
Have you had your eyes tested? ON would mean you’d definitely have that second clinical lesion. There are a couple of walk-in ophthalmology clinics near me - perhaps there is one near you? Your GP can refer you to them, and that way you could find out about any eye problem before you see the neuro.
One thing. All the current DMDs for RRMS involve needles. There are pills in the pipeline, but they are unlikely to be available for a while. If you are RRMS and you really can’t consider using needles, there isn’t such a rush to get the diagnosis. I know having a label is incredibly important for loads of reasons, but you have a while before not having a label will mean not getting treatment.