Hi i had an MRI scan due to dizzy spells and numbness back in May to be told in July that i have Demyelinating Disease of the central nervous system so have been referred to a neuro specialist in Nov. They have said that this along with my symptons MS is highly likely. My head is all over the place at the moment and wondering if anyone else has had this in their MRI and if so did you have any other tests to confirm if you had MS. Thanks
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Hi Bexsh
You may be in the highly likely MS camp for a while; MS diagnosis is usually a result of several MRIs over a period of time, evoked potential tests, and lumbar puncture results. Most Neurologists follow the McDonald criteria for MS dx - basically symptoms / demyelination activity happening in different body parts at different times ie. numb left arm in March / bladder issues November sort of thing. It is common to have regular checks with the Neurologist and follow up MRIs to see if there is progression/activity or more lesions in the CNS.
I was initially being looked at due to possible neck injury, which eventually turned into Neurology referral. The Neuro MRI(s) showed signs of demyelination - CIS (Clinically isolated syndrome) / possibly/probably MS (family history of MS); I had evoked potential tests, a lumbar puncture showing positive oligoclonal banding and several MRIs over a period of years prior to diagnosis - the last spinal MRI showed 4 lesions which had not been there before which led to the MS diagnosis.
Hi Bex. Diagnosis of MS seems to vary between neurologists, hospitals etc. In my case , 18-19 years ago I saw my GP about tingling in my arms and back. The GP said OK let’s keep an eye on that and together we speculated that it could be MS. The tingling went away but maybe a year later ( can’t remember for sure) I had an episode of optic neuritis- lost all vision in my right eye. I went to ‘eye’ outpatients at the local hospital, got an MRI and they said I have ‘quite a few’ lesions and referred me to Neurology for likely diagnosis of MS. There was then a frustrating period of waiting for a neurology appointment- can’t now remember how long i had to wait : weeks- months? Neurologist asked me a few questions and history of symptoms and told me there and then that I had MS and started the process of providing a Disease Modifying Treatment. No mention ever of lumbar punctures
I had one MRI after optic neuritis in May and a weird tingling in my right hand that went after a few months and no answer from nerve testing at hospital around 6 years ago. My grandma also had MS. I had to really advocate to my doctor for a MRI.
I was also after my MRI, told it was high likely to be relapsing remitting MS by my doctor when they got the results. Then I was told by a neurologist it was highly likely and then it was confirmed via a letter a few weeks ago.
Just been to another neurologist today in Birmingham, where I have recently moved to discuss DMT after the birth of my second child in February. Also making a claim on my critical illness but am unsure if it will be accepted but it’s worth a go.
Keep the hope. I’m feeling a lot more positive after being messed around a lot and being told highly likely. It’s so frustrating, but this group is great and the help is out there.
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I really hope that your critical illness claim is accepted. With everything else one has to deal with, taking some pressure off on the money front can really help. I’m the person who clicked no thanks on the ‘do you want to take out critical illness insurance?’ box when I was 36 and invincible. 
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Thank you, I can’t remember if as a young 20 something if I answered all the questions correctly especially about the hand tingling. I think it was my Dad who said I should start thinking about pensions and life insurance for the future, good job it was one of the pieces of advice I listened to! The payout wouldn’t cover the mortgage but it would be one year of my earnings covered and a safety net for my family. Obviously like all of us, in the spring of youth, I thought I won’t ever have that disease, that won’t happen to me!
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Bloods sent to Oxford to test for Neuromyelitis Optics. Came back negative. Lumbar puncture found inflammatory protein thus MS diagnosed.
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I had that test too. I have never come across anyone who tested positive for it.
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