Would be grateful for a bit of advice - a bit of background in August last year I suddenly developed double vision, it was like someone had flicked a switch. I was seen at the eye infirmary (my optician recommended I go straight there). I had developed a strabismus in my eye (I had never had a squint before in childhood etc). Basically my eye movements were not synchronised. I was also told I had a degree of nystagmus. This settled down in a few weeks and the eye doc sent me for a brain mri in Oct and did blood tests - the bloods were all normal but the brain scan had show some areas of hyperintensity so I was referred to a neurologist. Around Christmas time I started having probs with my balance and coordination in my hands. When rising from a chair it was as if my brain wasn’t working my legs and the first steps were very strange then the following steps were ok. I had terrible fatigue worse than I’ve ever experienced before. The eyes etc have settled down but I am still experiencing stiffness in my legs and feet and the left foot is slightly inturned and am still having some balance problems. I saw the neurologist in Feb and had neuro exam - she only had the mri report and not the film. After the assessment she told me that the most probable cause was ms and did a load of bloods and mri brain with contast. I had the scan on 11 April and got my results today . I wondered if anyone could advise please. (I was seen by a neuro approx 13 years ago because of problems walking in a straight line and coordination problems in my hands this was just after my daughter was born and after waiting a year to see the neuro, the symptoms had subsided by the time I got my appt. I am 43 years old now.) My most recent letter says “There are a few foci of high T2 weighted signal in the periventricular white matter. None of these lesions demonstrated restricted diffusion. There is no evidence therefore that any of these lesions are recent or “active”. therefore I think she still does not fulfill the criteria by definition for multiple sclerosis”. I was wondering if this means ms has been totally ruled out and also would the events of aug last year still show as active lesions?? Sorry for waffling on and thanks for any help anyone can provide. Keep well Jules
Hi Jules, and welcome
The letter says that you have some lesions next to the lateral ventricles, the “lakes” of CSF in the middle of the brain (CSF being cerebrospinal fluid). Diffusion weighted imaging (DWI) is a type of MRI scan that shows up the flow of water; where flow is restricted (“restricted diffusion”) indicates active lesions, ie lesions associated with a current relapse.
From what you’ve said here, I cannot see how the neuro can rule out MS. My thinking:
To be diagnosed with MS, someone needs to have had at least two attacks (you have) and have at least one lesion in at least two places typical of MS. If we take the purely clinical route regarding the two different places, you have a problem with your cerebellum and/or corpus callosum (nystagmus, difficulties with coordination) and it sounds like you have a problem with the upper motor neuron, the pathway from the brain that tells muscles when to relax (your stiffness and turning in foot) = two places. If we take the MRI route instead, you have the periventricular lesions, but to be diagnosed you would also have to have lesions visible elsewhere too. This begs the questions whether or not you had any spinal scanning done and just how good the brain scans were. So clinically, it sounds awfully like MS (to unqualified! me), but there may be a lack of MRI evidence to support it. When this is the case, it is possible to use other tests. Have you had any (e.g. lumbar puncture, VEPs)?
The question about active lesions is a very good and a very important one. To my knowledge, active lesions are active during a relapse. That’s it. Once the relapse has started to go into remission, there will be no particular sign of activity via contrast or DWI. As such, an MRI scan done in April will not show up any activity from August or December: I would expect lesions from those attacks to be non-enhancing and, although potentially less bright, not especially different from any lesions from 13 years ago.
In which case, I think you need a second opinion.
One thought: if there were no changes between the first and second scans, she may only be counting the August attack and have you down as one attack and not enough lesions. This would mean that you would be classed as clinically isolated syndrome (CIS). Personally, I don’t think this is appropriate - I would say that “probable MS” would be more appropriate if MS is a step too far for the current evidence, but then I’m not a neuro.
Maybe discuss your options with your GP? Definitely ask about extra tests too.
Hi Karen I really appreciate you taking the time to reply, you really helped me understand better. I haven’t had a mri spine or any other tests other than bloods. I have found out I am to receive a review appointment with neuro i will ask about other tests then or maybe they will just do a watch and wait to see if I have any further problems. Although must admit the thought of a lumbar puncture fills me with dred but will cross that bridge if or when I come to it. The hardest thing I suppose is the fact that there is no definitive test and a lot can come down to an individual opinion from one neuro or another. I was afraid at first that these things would happen suddenly again and the lack of control over it and must admit I was beginning to feel like I was going round the twist, but am feeling much brighter and learning to be a bit more patient as I now realise the path to answers can be a long one. Keep well Thanks again Julie
Hi all - not be on forum for a while - just a quick question . I have had to see a different neuro because mine is off. He said my brain mri is normal (previous info received (There are a few foci of high T2 weighted signal in the periventricular white matter. None of these lesions demonstrated restricted diffusion. There is no evidence therefore that any of these lesions are recent or “active”. therefore I think she still does not fulfill the criteria by definition for multiple sclerosis".). I am still having probs with my legs, vision has settled down but apparently have increased tone in both legs , up going plantar response and some abnormal reflexes. Just had LP done and MRI spine but no results yet. I am just confused as to how I can be told result is abnormal at first and now normal on the same scan result. Wondered if anyone could shed any light. Thanks for the help, keep well Jules