I’m new to the site. I had some problems recently with my eye sight (one eye ended up drooping alot as it really didn’t want to work!). I was going through a stressful time and assumed it was linked to this and eye-strain.
The opthalmist at the hospital sent me for an MRI scan and I know this has come back showing I have white scars on my brain. The Dr said that this is an indication of MS. I have been referred to a Neurologist but there is quite a waiting list for this (6 months). Several years ago I suffered from a bout of vertigo and my balance has never been great - I’ve just got on with things and assumed I was a bit clumsy.
What else could cause these scars in the brain?
Hi Fade, and welcome
A six month wait to see a neurologist is absolutely ridiculous! Grrrrr! There may not be anything that can be done to bring it forward if your symptoms are stable / OK (even though it is well beyond government target waiting times!), but if you get any new symptoms get your GP to contact the neuro and ask for an earlier appointment.
As far as scars on the brain go (the common word for them is “lesions”), there are actually lots of causes including relatively simple things such as vitamin B12 or E deficiency, migraine and smoking. What the neuro has to work out is which of the potential causes fits with your symptoms. This sounds relatively straightforward, but unfortunately there are actually lots of different things that can cause the same symptoms. So, while a droopy eyelid, vertigo and balance problems are consistent with MS, it still could be something else.
Try and hang in there. Waiting is horrible, but the MRI shows that you don’t have something wrong with you that needs urgent treatment, so you can relax about that at least.
I hope you get some answers very soon.
I had the appointment made last year and so should be seen June/July this year. I have spoken to my doctor about tiredness and headaches and he will see what is happening wth the neuro appointment.
I have been taking cod liver oil (and witamin D with this) as I was told this is good for eyesight. So hopefully this will help with any deficiency here if I do have one.
I’m feeling relatively ok but obviosuly would like some answrs! Hopefully I will ge some help with my balance, as I have fallen off my bike and fall into things, regardless of a diagnosis. I gave up alcohol in January which I’m glad about as at least people won’t think I’m unsteady because I’m drunk!
I don’t like the sound of you not having an appointment through yet - sometimes these things don’t get done properly! Hopefully your GP will sort things out though.
A lot of us have problems with balance, and had the “OMG. She’s drunk!” look from others
You could ask your GP to refer you to a neurophysiotherapist - they can show you exercises that can help.
Sounds like good advice - MS or not my lack of balance and the vertigo are a porblem that I will need to sort (if possible).
I can’t help much, but if it makes you feel any better there is a 6 month waiting list to see the neuro here, too. I’ve been on the waiting list for months already, and it doesn’t look like I’ll be seen anytime soon. There are TWO neuros in the entire region that I live in (I’m in New Zealand) - so it takes AGES.
Hello & Welcome Fade,
I’m afraid I can tell you any more than Karen has, but just wanted to say hi,
Hello Heather and welcome to you as well, so sorry to hear that you to have a long wait. Hope it goes quickly for you and remember we’re here if you want to chat.
Yes - it is a long wait but I assume this is because my case is no longer classed as “Urgent”. When I first had eye problems and I coiuldn’t walk across the road on my own or read anything, I was seen within days.
I finally had an appointment with a Neurologist today (on a Saturday! - the NHS are trying to cear massive backlogs). The neurologist was excellent and explained the situation really well. He says that I have MS but that I am doing very well with the symptoms that I have. I am often tired - which I guess makes me look bored/lazy and my balance is rubbish. I am being referred to an MS clinic for a possible treatment plan. I’m feeling very positive about things - I guess it’s nice to have answers.
I took my partner into the consultaion and we seem to have misheard what the neurologist said about the lesions I have on my brain. My partner thought that he heard that these could disappear/heal over time whereas I thought that this was not the case. Could anyone clarify this?
Glad you finally got to see a neurologist. The probem with being hit with a diagnosis is that it’s difficult
to take in what they’re saying to you. Good to have your partner in too, two sets of ears. However,
think you’re right - lesions cannot heal.
Have a look around this website it has so much info. And the forums are a huge help.
Keep well, Jen x
The neurologist told me to write down a list of questions that I have for the follow up appointment with his colleague. I’ll add my question about lesions healing to this.
The lesions thing is a tricky one. The body does attempt to heal them, but while some function can be restored, it’s never perfect. However, the level of repair is often good enough for the lesion to disappear on MRI. Over time, as lesions increase in number, the body can’t cope with repairs any more so there is less chance of recovery and a lower chance of lesions disappearing on MRI.
Tbh, for this and other reasons, symptoms are far more important than lesions.
Thanks. That makes sense of what the Dr said.
I’m feeling tired alot. It’s strange because I doubt this came on suddenly. I must have done a pretty good job of hiding and ignoring it. I have a big holiday in November and so I need to work out how to manage this if it’s still a poblem then.
I’m just revisiting this thread to post a question. Rizzo - early up thread you did mention that there are many causes of lesions on the brain.
I haven’t seen a neurologist since I was diagnosed last June but I’m pretty sure I didn’t mention strongly that I have always suffered from headaches.
If headaches or migraines can cause lesions, do these lesions or pattern of these look different in an MRI scan?
Migraine can cause ischemic lesions which look different to MS lesions, but it can also cause nonspecific white matter lesions which look just like MS lesions. Not everyone with migraine get these though, and if they do, they may not get both. It also depends on what type of scans are done whether or not these, and other things, show up.
But MRI is basically used to confirm/refute a theory, not to diagnose. The neuro considers someone’s history, symptoms and clinical signs and comes up with a hypothesis about what’s going on and then tests that hypothesis via MRI, LP, etc. If the hypothesis is MS, then lesions meeting the McDonald criteria are expected as well as a positive LP. If the hypothesis is migraine, then lesions may or may not show on the MRI and the LP is expected to be negative. So, in theory, the lesions may look identical on both sets of MRI, but the conclusions might be different.
MRI is just a test. The important stuff is the stuff the neuro does.
Is there a problem with your diagnosis?
Thanks for the helpful response.
No - no problems with my diagnosis. I was told when I was diagnosed to keep a list of questions I had for when I see my proper asssigned neurologist (I was diagnosed by another neurologist - a colleague of his - the waiting lists were very long in my area and the hospital had introduced a startegy to cut the waiting lists).
I guess I’m just wondering if I didn’t give enough information at the time. Eg. I didn’t mention that I had studied Chemistry at uni so who knows what the chemicals I had contact with then may have contributed to my health now.
I’m seeing my MS nurse for the first time in a couple of weeks so I’ll mention it then.
Headaches are important in diagnosing MS because of Hughes Syndrome - it’s supposed to be tested for as standard when considering MS, but maybe check you were, just in case?