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Worried about diagnosis

I have been told by a Neurologist that he is 95% sure I have MS. This was on the basis of my neurological symptoms and my positive Lumbar puncture for OCB’s. However My MRI of head and spine ( no contrast) were clear. I was wondering if anyone else has had a similar diagnosis?

If you have a positive lumber puncture you probably have MS they might have caught you early and don’t have any lesions

Hello Rosie

Oligoclonal bands are present for most people with MS (up to 95%). But they are also present in the CSF of people with other diagnoses. For example Lyme disease and other autoimmune diseases.

The standard for diagnosing MS is based on the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria You’ll see that diagnosis of MS is in the main based on the presence of lesions seen in the brain and/or spine upon MRI. Without lesions in the CNS, you cannot be diagnosed with MS.

So, the question is, did your neurologist say he was 95% certain you have MS before or after your negative MRI scans? If it was before, chances are he may have changed his mind now. If after, then I imagine he’ll be adopting a ‘watch and wait’ plan. And arrange a new series of MRIs, depending on your symptoms in the meantime, after a period of time.

Best of luck.

Sue

Kayrb thanks for your reply. Is this possible not to have any lesions but still have the symptoms? I thought the lesions would explain the symptoms?x

Hi Rosie-Bluebell, I think this is extremely rare, but one of my MS buddies has MRI’s which show no scarring. Apparently it doesn’t always show up, but like I say, I think that, amongst all our special cases, she is a particularly special case!

Her neurologist diagnosed her based all her other clinical evidence about 15 years ago. She does definitely have MS (if it was anything else, it would have shown by now), but her MRI’s don’t show anything.

This is purely second hand knowledge on my part, as my MRI’s unfortunately show plenty of legions. Has anybody else ever heard of this phenomenon?

So after my MRI head scan that I had in April was intially reported as normal by radiology, I had an appointment with the neurologist yesterday who informed me that there was several small lesions evident that were missed. He did show me them and I can see why they could have been missed. He said based on my symptoms, bloods results (ruling out other causes) positive Lumbar puncture and the MRI images I was diagnosed with MS. At present the neurologist states it is a mild form and has prescribed me amitryptiline for my tingling & numbness symptoms. He has requested that I get another MRI scan in 12 months. I feel relieved that I finally have a diagnosis for why I have been feeling they way I have been but now scared.x

Hello

I’m not surprised you have conflicting emotions. Yes, it makes total sense to be relieved to get a definite diagnosis, but simultaneously be scared of the uncertain future ahead of you given that diagnosis.

Might I suggest you start keeping a diary of how you feel day to day. It could come in very handy later on when you see the neurologist again. If you start to have relapses in the next few months, you could contact the neurologists secretary and ask if your appointment could be moved up.

Equally, you should be referred to an MS nurse, who could make life make sense for you again. A good MS nurse is honestly worth his or her weight in chocolate! If you don’t get the contact details for an MS nurse, again, phone the neurologists secretary and ask how you get to see an MS nurse.

And of course, you can keep coming on here and asking for our support and experience. We’ll try to help if we can.

Sue

Thanks for your reply Sue. I will phone his secretary next week to see if I will get to see a MS nurse. It would be good to speak to one - hopefully sooner rather than later x