Brain lesions on MRI - have you had this?

[clemetteattlee]

In May last year I was floored by an intense attack of dizziness. I was off work for a month and although it has subsided I have had mild dizziness ever since. I have fatigue, muscle aches, and numbness/pins and needles as well as horrendous migraines. GP referred me to ENT who sent me for an MRI. I have since been for a further MRI and finally got some results today. The first one showed no tumour but did show white matter lesions ("more consistent with those in the elderly" according to the consultant's secretary who gave me the results). I am back at the hospital on Tuesday to get the results of the second MRI and hopefully some idea of a diagnosis.
I am trying not to panic and know that speculation is essentially pointless but I have read that migraines can cause these lesions so I wondered if anyone out there had these lesions and didn't have MS??

I have had the enhanced MRI, LP (after about 6 attempts ) because I went to A&E (on the advice of NHS Direct, after my GP wouldn't give me an appointment for 3 weeks...) with the eye thingy where your eye can't look in one direction (couldn't look left with my left eye, it jumped back to centre), the torso hug thing, tingling then numb extremities, bladder problems, extreme balance problems, double vision, dizziness/vertigo.

This was in early 2008. I saw various neurologists, had the nerve test which confirmed a delay on one side, lesions spotted on the MRI, the band things on the LP.

No diagnosis possible. No further symptoms - though it took about 6 months to recover from that lot. The only thing I've done is consistently take a vitamin B complex supplement, which the neuro told me might help, couldn't be sure, but it couldn't hurt.

Good luck with the next investigations (and your exams!).

I have been reading about the value of vitamin b and D for neurological disorder and will be definitely trying that (it can't hurt!) It seems odd that they couldn't give you any diagnosis, especially with oligoclonal bands and lesions, but it is great that you haven't been ill since. It is a frustrating process isn't it?

clem, did you also have AGA test, which I believe would be more relevant to non-celiac gluten/brain connection. Or any gene test or even just the family history?
I would be inetested to find out what they will find as have been through numerous tests with my ds and his symptoms were not that diff to yours, so your results could possibly overlap with my ds in some way.

I will keep you posted. Do you know how many lesions he has and in which areas of the brain?

He had very significant neuro symptoms, balance, ataxia etc, but drs said there was nothing they could do for that anyway and gave us prognosis of downward spiral with not even a hope of stabilisation, so we declined mri as didn't want to sedate him. We tried the diet in absence of anything else, once I realised it worked, I couldn't see the point.
I was only really hoping to stabilise him, but he improved beyond my (or drs) expectations.

Clem - there will be lots of reading you can do and I believe lots that you can do which the medical side of you may be sceptical about but which can't hurt! Vit D3, Vit B and lots and lots of good oils - fish oil, nuts and seeds. That sort of thing you can start right now while waiting for the bigger MRI.

And yes, book a scribe for your exam.

And can I give you huge kudos for how calm and poised you are being whilst facing what must be very disturbing symptons. I hope you truly are that brave, but give yourself permission not to be too.

meant to say in my reads I have seen pubmed papers on lesions caused by gluten, inc pictures

also, good luck for the exams!!

Thank you both.
Workingit I am a graduate entry medic and as such am much LESS sceptical than normal. I will be in Boots tomorrow buying my vitamins . I do hAve moments where I get anxious, but to be honest most of those were before my MRI. I was worried that someone would turn around and say "you have all these symptoms but we can't find anything wrong with you" and then there would be no hope of any treatment. It sounds ridiculous, but now they have found something I can concentrate on understanding it and reading all the positive stories of how many people live well for many years.
My hands and arm have been better this weekend with only numbness and tingling rather than weakness, so I hold out hope that whatever I have it is slow-progressing.

Just a recap on this. My sensory symptoms got a bit more intense. I saw the neurologist, had an enhanced MRI and got my diagnosis of MS on Wednesday.

clem I'm sorry to hear that, hope you are well.

Sorry to hear about your diagnosis, OP. I read your last post first and I have just worked my way back through your thread.

At least you know what is causing the symptoms now.

As you are say, you are a positive and well-informed person - you will make the best of whatever happens next. I have no personal experience of MS but I do know someone who had an eleven year remission from symptoms.

I hope someone with more knowledge/experience comes along soon so that you can have a better discussion.

Wishing you good luck.

Clem have a read
here

Hi Clem.

I'm so sorry to hear of your diagnosis. I have MS also, I was diagnosed 2 years ago. I know it must seem like the end of the world now but it isn't. Mine's been in remission for a year and a half and I've had good results with accupuncture as it seems to have reduced the symptoms. There's a few different types, I have relapsing remissive so it goes. I'm sure it's stress related as it seems to return when I'm really stressed.
The best advice I can give you is to take each day as it comes. I was told by the consultant that the younger the patient is, the easier the condition is to manage. A lot of his 'younger' (under 50) patients are living 'normal' lives. If you need someone to talk to then you're welcome to send me a PM.

Hello Clem :)

Very sorry to hear of your diagnosis - it's a lot to take in. I was dx with RRMS in 2006 after a similar diagnostic route - MRI of brain and spine showing 2 periventricular lesions and 3 cervical spine, LP positive for oligoclonal bands. I presented with dizziness, MS 'hug', sensory symptoms, neuropathic pain, bladder issues, tremor, some niggling eye pain/flickering, blah blah blah - timeline from first Neuro consultation to diagnosis, following Macdonald criteria, was around 18 months.

If you're in the RR camp (which it sounds like you are), next step could be to think about disease modifying drugs. I've been on Rebif (injecting 3 times a week) from point of dx until recently - have come off because we're thinking of having another baby. With DMDs, if you're comfortable with tackling it with drug therapy, the sooner the better is the advice I've always been given. There is not one symptom on my list which hasn't been considerably alleviated by low dosage medication - and advances in treatment options are coming on in leaps and bounds for the future. IV steroids (methylprednisolone) for 3-5 days for relapses, as quickly as possible, make you feel like you been run over by a juggernaut short term, but do see the relapses off in good time.

The MS Society website has a wealth of info and a great community board - I spent a lot of time there chatting things through with folk in the same boat. Everyone is different, of course, but a maintaining a positive attitude has really helped me stay on top of my dx. A wise soul described it to me as not a dead end, just a series of road humps :)

Like posters below have said, please feel free to stay in touch on this thread or via PM. The dx is a kick in the guts, for sure, but 6 years post-dx I'm still well, coping with the symptoms as they come and go, enjoying my DS, contemplating another, working full time, and formulating plans to change direction and go back to college to study Nursing.

I have my bad days, of course! There will be crap times ahead but support is readily available if you need it. One thing you don't ever have to feel is alone :)

Nightcat - still not convinced I am afraid!
Thanks all for your comments. LadySybil I'm sure you are right about the stress - my exams we interesting with me falling off chairs and unable to write but since then I have been much better.
Spider, thanks for your comments. We have decided not to have any treatment just yet beyond high dose Vitamin D. My neurologist is keen to see the course of my relapses before deciding which course to go for and, as I am feeling pretty well at the moment, I agree.
I do feel some relief at getting the diagnosis and determined to just get on with it and see what happens.

Have you spoke to the Uni yet? They can put a support plan in place so that you get extra time in the exams or for coursework, use of a computer in the exams etc. My old uni was dire though. They did a support plan but I had major issues with the course leader (Radiography). She was causing most of my stress so I left the course. I couldn't face another year and a half of her. It's down to you whether you tell them or not, they can't help you if you don't though.

Thanks, they know as I have just sat my pre-clinical exams and so needed to let them know. They were really good and have been very supportive so far. I think the only issue I have immediately is that I can't stand up for very long and so need the scary consultants to know the sometimes I will need to sit down!

That sounds helpful. I was quite relieved when I was diagnosed. I'd spent so long feeling unwell and they could find nothing wrong. I was starting to think that I'd made it all up. There's a lot of people in the NHS with health problems so you're not alone. It really does help to take each day as it comes. Reduce your stress levels if you can, I know it's hard sometimes but it really helps.

I do feel relief. I was worried they would dismiss me as it being something psychological so when I saw how many lesions I had I was almost pleased (I think you understand what I mean) that they would have to try and find some explanation.
Glad to hear that you are keeping well. Do you take another treatment besides the acupuncture?

I know what you mean. The neurologist I saw initially told me I had a migraine (for 6 weeks). He only did a MRI to shut me up. It showed lesions, I don't know how many though. I had a LP which detected a huge number if bands in the cf. No, no treatment. I had a relapse a year and a half ago (I think they called it a brain stem episode). I woke up one morning and one eye was pointing in the wrong direction. When I moved it, the other would look wrong. The steroids stopped the incredibly pissed feeling but didn't help the eyes. I went for acupuncture to see if it would work. I woke up the day after the first treatment and the eyes were pointing in the right direction. I had 4 more sessions and the burning/pins and needles reduced by 90% and I had more energy then I've had for years. It was bizarre. I've had acupuncture before elsewhere and it hasn't worked though so I'm not sure what happened. I can recommend the chinese doctor to you if you're in Derby. I've been fine since. I had expected to relapse when my iron levels fell (fibroids) but I didn't. I'm going for the wait and see approach with regards to DMT.

Thanks. I am in Nottingham but would like the details of that acupuncturist if things get worse soon. Are you in Derby? Have you joined the local MS society?

I live in Derby but am in Nottingham during the week for the school run (I need to move!_. I haven't joined. It freaks me out a little to be honest. The last time I had a relapse I had to have a hospital appointment. All of the patients were in wheelchairs and looked so unwell. I know that there's different types and younger patients have a better prognosis but it really scared me. It was the second relapse in a year so I knew that I'd end up this way unless I did something about how I was living. I quit my course and did something I've always wanted to do. I sit and write children's books now, it's fab!

Wow that does sound fab!
My neurologist said last week that when he next sees me he doesn't want it to be in an MS clinic in case I find it too distressing so I assume that is what he meant.
I Don't think I will join for a while.

I'm in Nottingham every week day if you ever wanted to meet up for a glass of wine coffee.

The MS society in Nottingham looks good, lots of complimentary therapies. It's very good to destress so I'd use these. I'm sort of a 'get on with it' person though which I think helps. Do speak to the Uni, the extra time in exams can really help. You should also be eligible for the disabled students allowance. I found this crazy as there were students who were far worse off then I was.

Hi Clem. Just wondering how you are?