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Spots on brain MRI

(8 Posts)
purpleshimmer Thu 04-Aug-16 12:22:47

Hi all
I took a very funny turn last week and had severe dizziness and weakness down one side, I was referred to the TIA clinic who did an MRI yesterday.

The consultant rang 2 hours later to say that they want to do another more detailed scan as they have found some "indiscriminate spots"...he assured me there is no evidence of stroke, no clots and no tumours so I don't think it's serious as such.

However I have had high blood pressure for years and it has recently got much worse. I also have bowel and bladder issues and suffer from chronic daily headaches and tiredness. I am drained all the time! I also have had depression for many years.

I have basically struggled and had many things ruled out but no one has bothered to get to the bottom of things so I just basically cope the best I can.

My sister has MS. I have googled and the spots can be MS can't they? I'm worried I might have this too?

Does anyone have any experience of these spots. Did anyone have a further scan and then given the all clear? Maybe they are just part of how I'm made lol!

Just wondered what other people's experiences are.
Many Thanks

HyacinthBouquetNo1 Thu 04-Aug-16 12:46:20

Yes, I have numerous white matter lesions in my brain, no idea what they are. There was a question of MS as I have lots of sensory symptoms, double vision, dizziness, fatigue and numb patches. I had to have a lumbar puncture and it was normal so Dr said not MS. I never got a follow up appointment so I am no nearer finding out what they are. I have not had any more scans.

Since March though I have been very unsteady and dizziness, I also have a pulsing and whistling in my ears, I am now waiting to see an ENT in case it is something to do with my inner ear. bet they are sick of the sight of me

Sorry, not much help, but at least you are having another scan so maybe you will get some answers at least.

purpleshimmer Thu 04-Aug-16 22:34:16

Oh you poor thing that sounds terrible and especially as they still haven't found any answers.

It's really annoying when the doctors test you for things and say it's all clear but then send you on your way....it's not like your symptoms just disappear is it!!

I hope they get to the bottom of it and you feel well again soon.

BatSegundo Fri 05-Aug-16 21:01:29

hyacinth Not everyone with MS will have a positive lumbar puncture. And people who have a negative lumbar puncture can go on to have a positive one at a later date. Your symptoms may be due to something else, but many of them are classic for MS and you have white matter lesions. I think you should push for a second opinion from a neurologist who specialises in MS. Hopefully, you don't have it, but if you do, there's lots of different treatments out there now and they all work better the earlier you start them.

Purple it is possible that the spots are just part of you. They say that if you look at the brains of most people in later life, they'll have one or two. However, you have got some suspicious symptoms and a family history, so it's good that they're going to investigate further. And if it does turn out to be MS, you'll be able to get some treatment started.

Good luck to both of you flowers

HyacinthBouquetNo1 Sat 06-Aug-16 12:31:05

THANK YOU, Bat! At last, I have an answer to the question that has been bugging me for over a year regarding the lumbar puncture. I even asked on the MS Society forum but got no answers. I wanted to know if it was possible to have MS and have a negative LP. I presumed not.

I have been told by a Rheumatologist that my symptoms are due to fibromyalgia. The Neurologist I saw was a MS specialist and he said he didnt think that I had fibro confused and ordered the MRI scan. I never had a followup appointment, I just got a letter saying I dont need to be seen again, and round and round we go!

I am seeing ENT in 2 weeks so will see what happens then. I am wondering if it would be reasonable for either ENT or GP to order another MRI scan? It is 15 months since I had it and the dizziness and balance probs are a lot worse.

SarahJinx Sun 07-Aug-16 19:06:42

I had a head MRI a couple of years ago after weeks of tingling and coolness on my face. Nothing showed except for white matter lesions. My neurologist said also that they are perhaps common as you get older (I was 37 hmm) but also that I may or may not go on to get MS at some point. She said i could have aome invasive teats like lumbar puncture which might not tell anything either and also that the checks she had done prior to ordering the mri told her that even if I was in the early stages I wouldn't be getting treated anyway. I'm not saying any of that is right just relaying my experience . The other thing of note was that I have RA and white lesions might be more prevalent in people with inflammatory conditions....

wherethefuckisthefuckingtuna Sun 07-Aug-16 19:19:13

Hi Purple

Sorry you're going through this.

A lot of your symptoms can point towards MS (although of course it could be one of a number of things - things as simple as a vit B deficiency can cause neuro symptoms). However - my neurologist has told me before that a small number of white matter lesions are totally normal for anyone - especially as we get older.

I have MS (diagnosed June 2014) and have a number of lesions on my brain, thoracic spine and cervical spine. I have a history of bladder issues, visual disturbances, "silent' migraines, spasticity, cognitive issues and fatigue.

What are the next steps? Can you ask for a neurology referral? If only to rule it out and put your mind at rest.

If you'd like to private message me with any questions, please feel free.

BatSegundo Sun 07-Aug-16 20:49:10

Hi hyacinth. Glad you found it helpful. If you want to read more, the information came from the Bart's blog, which publishes abstracts from MS research and offers comments from various clinicians and researchers at Bart's. This page mentions it about halfway down. And in this comment section, a post by one of the neurologists talks about different results in different ethnicities and cites research about people who initially test negative going on to test positive.

Of course, your negative result may be wholly genuine, and it's positive that your results have been looked at by an MS neurologist. In your situation, I think I'd want to talk to someone about what's causing the abnormalities on your MRI if it's not thought to be MS. Is your GP helpful? Maybe go through with the ENT referral and if they can't give you answers ask for another reteral to neurology?

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