Hi everyone,
I saw my neurologist again last week to discuss the results of my second MRI scan. She had written me a letter saying they saw lesions on the images and that we would discuss it. When I got there she told me they looked non-specific and she showed me one, which was a small white blob.
She then said that the scan is essentially normal and still thinks all of my horrible symptoms are functional.
I’m not a neurologist obviously, and don’t claim to know anything about lesions, but I’m 23 and as she had already stated, having a number of lesions at this age is not normal. I’m so confused now! So I have lesions but they are not important? I don’t understand how you can diagnose a functional disorder when there is actual damage?
I’m moving city in a few weeks and will be changing neurologist, but I don’t know whether to really push them and get them to do some more tests or to just accept it. I suffer from a lot of cramping muscles, pain and fatigue and have been offered no medication or help despite asking.
Looking for some advice!
Georgie X
Hi Georgie,
Is your neuro a specialist in MS? If not, it might be worth getting a second opinion from someone more familiar with the disease. When my initial scan showed lesions the neuro I was seeing (who was a general neuro) referred me on to an MS specialist and I think this definitely helped resolve my diagnosis quickly. If nothing else it may give you better peace of mind.
Good luck
k xx
Hi Katy,
No, she is the clinical lead for the department but not an MS specialist. I’ll definitely ask to see one when I move!
Thanks very much 
Georgie x
I take it you had no other tests e.g. Lumbar Puncture, SSEP of limbs, VEPs for eyes?
No, to quote my neurologist “these tests take a long time to organise”. I did ask about them, but she essentially said no to it.
Hi Georgie
You’ve not said whether you have other MS type symptoms, so a lot will depend on that. But if you are experiencing neurological symptoms then seeing a specialist is the best plan. When you move cities, get a referral either from your original neurologist or from your new GP to an MS specialist neuro. Sometimes people end up seeing an MS specialist privately then transfer to the NHS post diagnosis for ongoing treatment. Or of course, you may find that seeing someone who can properly explain the lesions you have is sufficient to put your mind at rest.
I don’t think ignoring symptoms is a particularly good idea, we now have a wide range of disease modifying drugs (DMDs) available, and the current advice for people diagnosed with MS is to start treating it early as you have the best chance of avoiding disability if you avoid relapses.
Obviously, I’m not saying that you have MS, but it does seem that you need to have your MRI looked at and explained to you by an MS specialist doctor. And have any further tests done if they are warranted.
Sue
Hi Sue,
Thanks for your reply, I’ve had a variety of symptoms over the last 2.5 years which range from not being able to walk for 2 weeks because of not being able to control my legs, to pins and needles, cramps, dizziness, painful urination and fatigue. Some of these have resolved themselves over time, and others continue and get better and worse seemingly randomly.
I’m returning to Cambridge, where I used to live when my symptoms first started. So I have a named GP to return to and a previous neurologist. I will request to see a specialist though- my old neuro in Cambridge is not an MS specialist.
Well hopefully you’ll soon see a sensible neurologist who can organise other tests and explain results to you clearly so that you’ll feel reassured that someone with knowledge and experience has properly considered your circumstances.
Feel free to come back to these boards to vent your feelings as and when you have the need.
Sue
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