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Advice needed please

Hi,

Iv just recieved my brain scan report which says there are multiple spots of high intensity signal in the white matter. The radiographer adds that they are difficult to characterise but could be due to infarctions of demyelination.

I was wondering if anyone knew what could be the cause of these spots and if anyone else had had a report like this, which i feel is very vague leaving me with more questions than answers. Im waiting for appt to see neuro.

Thanks Christine

Hi Christine, unfortunately a lot of these things seem vague. The neuro will be able to tell you more.

I take it you’re not diagnosed with MS?

Spots in the white matter can possibly be a sign of MS. They are usually called ‘lesions’ and it’s where the fatty matter around the nerves have broken down. That damage is what causes the symptoms in MS and is called demyelination.

Spots can be a sign of other stuff going on, but I think they will be looking at MS as one possibility amongst others.

Even after MRI they are not always sure as there isn’t one test for MS. They put your MRI results together with your symptoms and your symptom history. Even then they are not always sure and next step is to have a lumbar puncture to see if the immune system has been active in the Central Nervous System (CNS).

If it has, AND you have spots or marks on MRI, AND your symptoms match MS, then they can diagnose MS (the symptoms have to match the Macdonald Criteria. You can google that… It might be McDonald).

It can be a long drawn-out process. For me, it was over 2 years from seeing GP with symptoms to getting an MS diagnosis.

Hope this helps. Your neuro will be able to tell you more about what the MRI has shown.

Let us know what neuro says, and feel free to ask questions.

Pat xx

Thanks Pat…iv been going backwards and forwards to specialists with endless symptoms. Numbness, pain,weakness, deafness, extreme fatigue, some visual problems, slow at responding during conversations,brain fog, some memory problems, unstable on my feet,dizzyness…i could go on and on. Been tested for mysthenia gravis, neuropothy, polymyalgia and others.

I guess its a waiting game.

Im confused as to what infarctions of demyelination means when together as i thought they meant the same thing.

Thanks Christine

It is confusing. These medical people don’t always make things clear…but it does seem as though you have what would be expected on MRI for MS and your symptoms sound very MS as well.

I am however NOT a health professional so this is not a diagnosis by any means.

If I were you I wouldn’t worry too much about what the exact wording means. The fact that your MRI has shown bright spots is enough to worry about.

How would you feel about a diagnosis of MS? For some, esp if there’s been a long period of symptoms, it can come as a relief. Certainly was for me. Better to know what you’re dealing with and also there’s always that awful feeling that it might all be in your head (well it’s in your brain…not your head!).

When do you see the neuro? It may be worth seeing if you can get an appointment sooner. Awful for you living with this ‘not knowing’. You could always phone them and say if they have a cancellation could they fit you in? Or go and see your GP and see if she/he can hurry them along. Also, ask GP what they make of the MRI report.

Pat xx

Hi Pat,

I think like you it would be a relief to know what is wrong with me. One of my first symptoms was extreme hotness and i could not and still cant control my body temp.

Can i ask you if its normal for people with ms to feel slow at doing things and slow at responding to others when they ask you a question. I feel like im in a world of my own in some kind of daze alot of the time.

Christine

Yes Christine that is normal. You seem very slow and everybody and everything else seems very fast. Feels like being in a bubble.

I can promise you one thing, if it is MS, you do get used to it. It completely changes everything in your life but that new life becomes normal…and it’s not awful, it’s just different. In fact MS has taught me some things about life which I’m glad I know. It’s not just me that says that. Others say it too. So hang on in there.

The body temp thing is very MS as well. Look up Utthoff’s Syndrome. It’s common in MS for symptoms to get worse when hot, but also not to be able to control core temperature.

Take care, thinking of you,

Pat xx

Hi Christine. Pat has covered everything, I just wanted to say that I also found relief in knowing what was wrong with me (and I was neither a hypochondriac, lazy, or heading for a padded cell). No matter what the diagnosis is you’ll have up and down days and weeks while you process it before you can accept it all. This is normal and no matter what you feel or want to ask, these forums are very helpful, friendly and you get advice from experience rather than text books, the people here have all different symptoms and combinations thereof and were a huge support to me.

Good luck with getting your results, please let us know how you get on. Take care.

Cath x

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Hi Cath,

Coming on this site has really helped me…whatever it turns out to be all your support is really appreciated.

Without dwelling too much about my scan report i have looked at infarctions of demyelination and it appears demyrlination is from a lack of blood flow, i dont think this is the case in ms is it? Also the spots found on my brain were not measured, only the areas they were in were stated. Could that be because i had an mri without contrast.

I dont know what to think other than my scan report does not sound like many who have dx, althoough many of my symptoms do.

Sorry for the rant, i need to get my thoughts off my chest.

Christine

hi Christine, I have ms diagnoised 18 months ago misdiagnosed for at least 12 years as I didn’t have a typical MRI finding for Ms. I have 4 to 5 lessons on my brain and they are very small. It was only when I was sent to a neurologist who happened to specialise in Ms that I was diagnoised with Ms. I had evoked potentials which showed problems with the messages getting to my brain and visual evoked potentials which showed damage to my optic nerve, my lumbar puncture confirmed the diagnosis. As a result of all the tests I was diagnoised with atypical Ms which is progressive.

i am not saying you have Ms but it cannot be ruled out just because your MRI does not show typical signs.

regards

ann x

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My MRI scans don’t show enough lessons to dx ms either. I was told that all my problems were related to damage in my neck. It’s only when I was sent to a specialist in ms that he looked at the entire picture, especially history, examination and tests and a lumbar puncture which showed I definitely had ms as well as a spinal cord injury.

Everyone is different and I hope for your sake you haven’t got MS, but if you have it or another chronic illness there is help and support out there. I was a dedicated nurse and had really high expectations of myself but my goalposts have moved and now if all I manage to do today is to make someone smile I’ve done something worthwhile. There are always people much worse off than me.

Is your gp able to chat to you about your scan, just to put your mind at ease? Even though I was a nurse I don’t understand all the scan and other test results, sorry. Take care of yourself.

Cath x

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Thanks Ann, im learning what i can even though its all quite new to me even though i have a relative with ms and have been on this site so i can support him a little. He has PPMS and is in a nursing home.

I guess i will have to wait until i see my neuro and find out where he wants to go with this.Expereinces like yours do help and iv also found with other medical conditions that its finding the right specialist who have the right knowledge and experience.

Iv looked at the Mcdonald criteria and its quite rigid as to the size, location and number of lesions for a ms dx. If iv got that wrong could you let me know…maybe im trying to take too much information in, trying to make sense of it and getting the wrong end of the stick.

Christine

Hi Christine, I think you are 100% right to get as much info as possible. In my case because I was atypical my lesisons were not in the normal place. As well as the tests I wrote about in my earlier reply my neurological exam on my first appt. led to the neurologist saying to me I think you have an upper motor leision. Of course I didn’t know what that meant, like you I decided to educate myself a bit more after that and I got much more out of my consult ions.

even though he was sure it was Ms it was the lumber puncture in my case that confirmed it.

christine look after yourself, I think the waiting and the worry are the hardest stage. You desperately want answers and they can be slow in coming. I hope you get your nuero appt quickly.

regards,

Ann x

Hi Ann,

Knowledge is very useful and is helping me putt he pieces together. Fot a long time i have what i call flares of something or other but never quite know what they are.

A few years ago i had something very strange, i was finding it difficult to get my feel off the ground and the more i tried my feel seemed to go further and further into the floor, it happened a couple of times but not for hours and hours. I also have episodes of dizziness where i am unstable on my feet, a drunk like state i suppose, then it goes away and can return with weeks or months in between.

I had a really good day yesterday visiting my cousin who has MS, i was able to hold a conversation and was not as confused as i sometimes can be. Its on good days that i think there cant be anything wrong with me.

Thanks for your support

Christine

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I`m curious Ann, can I ask what you were wrongly diagnosed with please?

pollx

Of course you can Poll, fibromyalgia for over ten years was my diagnosis

ann x