Me again. So I’ve booked a brain scan privately for Saturday as the wait list for neurology in our area is 7-8mths. Probably I should have gone via a private neurologist so they could request with/without contrast or whatever, but it was an added expense I couldn’t really afford.
So really my question is, if there’s no lesions on the brain MRI, that basically means the chance that it’s MS is very low, right? But if there are then obviously that’s by no means a diagnosis, but does mean it can’t be ruled out yet.
I think my real question is, does anyone know if there’s like a … wrong “type” of brain scan (for want of a better description) or if any brain scan should show lesions if they’re there? I’m obviously fully hoping it’s going to be clear and I can sort of move on and look at other things whilst I wait for the neuro appt because I think Ms is such a varied disease that it’s really easy to find symptoms that match yours and convince yourself that’s the problem! But I can of course only feel satisfied it’s very unlikely if I know that any lesions which exist will almost certainly show up (I’m aware a small percentage of cases don’t show and that a small percentage are only visible on the spine, though based on my symptoms I’d assume if there are any lesions some would be on my brain, as some of the issues are cognitive etc, but as these cases are much less common I’d feel fairly confident to sort of mentally close the MS book, if the neuro chooses to re-open it then that’s fine but I want to stop fixating!).
So yes, that basically, will a common or garden brain scan show lesions if they’re there in your experience?
What is your experience of MRIs when you aren’t currently experiencing symptoms? So for example if you finally get to see your neuro but aren’t going through a relapse at that point? Are previously created lesions still likely to show without contrast?
Sorry for the long post!
This excellent resource, provided by a member of the forum and pinned on the Newbie section, might help.
But your questions are all way above my pay grade, I’m afraid. I definitely prefer to leave these things to the professionals. I am sorry that delays in the system mean you’re tackling it alone. I think the sooner to talk to a consultant neurologist, the better.
sadly I think you can have exceptions. Some very small MS lesions will not show on MRIs. Some people with MS do not show lesions, at least initially.
Also old people have lesions and similar in their ageing brains, so can be unclear what the cause of lesions on the MRIs are.
Good luck.
Hi, sorry for not replying, not been on in a while. So I had an ankle MRI privately for an unrelated issue and I was able to self refer for that, but for this one they insisted on either a GP referral or seeing one of their consultants beforehand to get a referral.
Hope that helps!
Hi, it was reassuring thank you for asking
There were a couple of tiny white spots but they said no evidence of demyelination so that was good. Ironically I’ve since had an nhs scan as my neurology referral went through more quickly than they said it would (well, I called to chase it as they said if you haven’t heard by a certain date, call up, but I assumed they’d give me a date months away. Initially they did advise that yes, they have my referral, it’s down as urgent but there’s a 7mth wait for urgent referrals, but they called back later that day and offered an early morning cancellation for the following week!). They said they couldn’t use the private results so repeated a brain and full spine but I’m now not antsy about the results as I basically know it’s ok! Just waiting for my nerve conduction testing appt on the 31st and hopefully there will be more answers as to what the issue is then!
I’m going through a similar process I have had scans and it’s not showing anything in relation to demyelination but I’ve had persistent symptoms now for about 5/6 months.
Twitching including in my ear drum now which is annoying, it’s almost constant that one part of me will be going, tingling, lots of odd sensations like buzzing or feeling my skin is wet or there’s something crawling there etc, pins and needles in weird places like my shins, face, ears, tongue, reduced or muffled sensation in some areas, weakness in my right leg, though I would say that’s intermittent, my right knee just buckles randomly, ridiculous brain fog and what I’d describe as losing auto pilot, you know how some stuff you can do without actively thinking about the steps needed, but I’ve been forgetting familiar routes, how to use a tin opener, how our TV turns on,.stuff like that. Insane waves of crazy fatigue, bowel and bladder issues (the first comes too easily, the second won’t come!)…and lots of other smaller things but they’re probably the most constant ones off the top of my head.
The neurologist said she would have blamed peripheral neuropathy but the symptoms were too widespread. She started pregablin which has helped with the constant pins and needlesy feeling and the weird sensations (and my restless leg which is a nice bonus).
It’s so so frustrating isn’t it, when you have constant symptoms but there’s nothing to be seen, I obviously don’t want any kind of life long condition but it would be nice if they could find something so I don’t feel like I’m mad or a fraud and so other people, family etc, can take the issues more seriously. It feels hard to believe there can be so much going on and nothing to see doesn’t it, but as my scan last time was private I scrutinised the images and really can’t see anything concerning either! But then you think “so what IS causing this?! How can you not find anything when I swear I’m not making it up, these symptoms are constant!”.
Very annoying, it would just be good to have some answers wouldn’t it! Hope you get some soon!
Hello, you have a lot going on and a lot of widespread symptoms as well just like me. I hear some people talking about the “big event” “the relapse” where something is very acute over hours and days. That’s not how things have been for me. I have to say my symptoms are quite widespread and sporadic like yours, crawling, tingling, random parts of the body, the most concerning symptom I have is my gait and balance feels off but everyone says I am walking fine I know I’m not!! I can feel it in my legs. Oh and crazy fatigue as well at times and head pressure.
I also went private as well for my scans, I am getting a second opinion next month 11th of August. I’m convinced there is something going on like MS. The neurologist is also going to give a second opinion on my scans as well which will be good!
At least we know we are not alone and hopefully time will tell what is going on with us. I totally understand about not having any clinical evidence and then thinking that people think you are making it all up and it’s in your head. Only we know it’s not in our heads and it’s really happening to us.
Hi, just wondered how you got on with your second opinion ? My symptoms and situation sounds a lot like yours! Struggling to get anyone to take me seriously. Thanks Thea
Hi, had second opinion on scans and they are all clear. Also had nerve conduction tests which came back normal but I am still not convinced. How are you getting on
Hi. I had an mri back in June. Referred by doc as on urgent neurology list but apparently can be 18 months so the doc asked for Mri to save time. Anyway even with all my symptoms (blurred vision and pain in eye, constant pins and needles in my one hand arm mainly but can occur other places now and again, numb hands especially at night, extreme fatigue especially muscle fatigue. Can’t do things with my arms long before they start aching , brsin fog, stiffness in joints especially around pelvis area, sometimes jumble words abs struggle to think of words or get out what I’m trying to say. Have had tightness in ribs) the mri came back with nothing significant. Had blood tests for everything and other than inflammatory marker being slightly higher than norm nothing showing so now been referred to rheumatology also to see if they have any ideas. It’s hard cus as much as don’t want something wrong I know there is.
Hi, can any of you give an update?
I’ve been struggling since November 2022,
With symptoms intermittent.
I’ve had improvement in some areas, but certain things like leg weakness, standing for long periods etc feels like it’s worse.
I know I’m not!! I can feel it in my legs. Oh and crazy fatigue as well at times and head pressure.