Small vessel disease or MS?

New diagnosis and before diagnosis
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Hello everyone,

I have just registered so I can ask if anyone has any advice or previous experience of my situation. I will try to keep a long story as short as possible. So 4 years ago I developed a problem with my left eye which includes left eye pain, dizziness & severe aversion to light but I won’t go into it now. It resulted in endless appointments seeing eye specialists before a Opthal-Neurologist ordered a brain MRI scan.

I received the results of this scan 2 weeks ago and was told that there were some white matter lesions seen but were non-specific and very likely small vessel disease. He said he was referring me to Neuro as my trigeminal nerve was inflamed so could be causing the problem with my eye. He said he was quite confident that it was small vessel disease and urged me to see my GP for a cardio-vascular check up.

I arranged this & saw the practice nurse last week for bloods, ECG, BP check etc and my GP has called me today to discuss and has left me very confused and not knowing which Dr to believe. My GP’s exact words were you are 49 not 79, your bloods & ECG are normal as is your BP, you could do with losing a few pounds but can’t we all and basically she said she didn’t think for a second that I had small vessel disease.

We started talking about my medical history over the past few years including extreme fatigue, sciatica, bladder issues, pins and needles in feet and brain fog in which she then said she thought they should now be looking into neurological conditions such as MS. I feel angry to be honest as all of these issues I have seen GP about I have felt very fobbed off usually being told its because I’m peri-menopausal. She also said that some people are told it’s small vessel disease when it’s actually MS and has told me to list any symptoms and discuss when I finally get to see a neurologist rather than just for the eye problem.

Anyway I guess my question is has anyone else here ever been told their lesions were small vessel disease only to be told later on that it’s MS?

Any advice would be very much appreciated.

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Hi Jacs

I have no advice to offer you but now at least you have your GP on side and things will start moving.

Good luck

Carole x

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I’m 62. In the report from my radiologist he specifically stated that it is not possible to tell small vessel lesions apart from demyelination lesions or for that matter, ones caused by lyme’s disease. As people get older they are more likely to start developing ones from small blood vessel disease. Therefore as people get older it gets harder to diagnose MS when they are relying on MRI scans and lesions, and lesions found are more likely to be attributed to small vessel disease as the probability that they are the cause increases.

There are some areas where lesions are found that are more typical of MS ones, and some areas that are more typical of small vessel ones, so that will part inform the evaluation of an MRI scan for the possible cause, but it is not definitive. Migraine sufferers also develop white hyperintensities too

They should also be looking at the amount of brain atrophy that is present (but they don’t - it is not part of the McDonald diagnostic criteria). The brains of people with MS atrophy at a faster rate than those without MS. Brain atrophy (of grey matter) is a major cause of disability in MS.

Lesions by whatever cause are actually signs of brain damage, so you will get neurological symptoms from them. So the type of symptoms doesn’t necessarily help in reaching a diagnosis.

The criteria for diagnosing people 50+ is much more stringent, and it looks as if your opthal-neuro has decided to view you in the 50+ category. Basically you have to tick far more boxes to get an MS diagnosis. However it does look as if he is referring you to a neuro for a second opinion. If that is correct, then that is good - you’ve not been just dismissed.

I have to give your opthal-neuro some credit. He at least suggested you get checked out for small vessel disease (i.e. advising getting your GP to checking blood presssure, sugar levels etc) as these are damaging to the brain but there are treatments and lifestyle changes that work well, and reduce the risk. So many neuros will just say your MRI was ‘normal’ for your age, and won’t even mention them. They don’t give people that important information, just leave them in the dark.

This article - very recent - can maybe help explain.

I presume you’ve not had full spinal MRI? Have you had a lumbar puncture?

Personally I’d go with the GP’s suspicions - that she’s not prepared to rule out MS at this stage. I’d ask her what she suggests should be done - whether she thinks more tests are called for. That may help when you do see the neuro.

Peri-menopause can cause a huge array of neurological symptoms too, often through dysregulation of oestrogen / progesterone but also by causing magnesium and zinc deficiencies. Women develop significantly more white hyperintensities than men of a similar age - maybe to do with hormones?

It does no harm to try to get your whole body working optimally, even as you wait diagnosis. The measures that reduce the risk of small vessel disease have quite an overlap with those that help with MS - diet, reducing stress, getting your hormones in better balance and correcting any deficiencies, regular exercise etc.

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Thanks very much!x

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Thanks so much that’s all really helpful!x

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Hi Ziola,

Thanks again for your helpful reply.

No I have not had a spine MRI or lumbar puncture as until yesterday I had not given MS a 2nd thought it was my GP yesterday who has raised the possibility which of course now having been awake all night and on every MS website under the sun I can see why it’s a possibility as I seem to have quite a few symptoms but as far as I know I’m only being referred to Neuro for my eye problem but perhaps they just don’t like to worry people. Thanks for taking the time to reply I have read that article and your other advice so feel a lot less worked up about it now.