Hi everyone my names Margaret I’ve just joined the forum. Almost 10 yeasts since my first symptom I’m getting an MRI brain scan (ended up going private since the nhs waiting list is so long). I’ve my scan in 2 weeks time and am really worried that’s it’s going to show nothing. Last July I saw consultant number 6. They can all tell me what’s NOT wrong with me but none can tell me what IS wrong with me. I’m 100% sure I’ve MS but what do I do if the scan comes back clear??
My MRI was inconclusive and I was diagnosed via a lumbar puncture. That’s not particularly helpful but maybe you need to manage your expectations a little!
I’m in exactly this position. Had a clear brain MRI scan. Report noted “recommendations none”
I also went private for this. It was done on advance of my appt with a neurologist which is on Tuesday. I’m hoping he will ask for an further scan of spine and a LP.
Meanwhile, in 4 months I’ve gone from healthy to struggling with the stairs and feeling extremely weak with numbness and dizziness.
I think I’m really just saying, you’re not alone.
Can’t offer advice on what next other than keep pushing. As hard and unfair to as that is. I’ve had no support from GPs up to this point, other than blood tests and being told I have labyrinthitis.
I’m in the US, so the situation is quite a bit different. Over here, we wait a maximum of 4 months for an MRI (if you’re a new patient), but it’s usually less than 2 weeks. All I can suggest is to keep trying.
My MRI’s were clear for years. Like you, pretty much everything else had been ruled out, my symptoms were consistent, my deterioration was steady. I couldn’t get a diagnosis until I finally had an MRI taken while I was in the midst of a relapse, and even then the neuro wouldn’t commit until I’d had the lumbar puncture.
Welcome to the forum.
Have you had an MRI previously which was clear of MS type lesions? And have you only had / due to have a brain scan or have you had / booked a spinal scan?
Sometimes people have clear brain scans but have lesions in their spine. Having said that, if your previous neurology appointment raised no flags for the neurologist, maybe it’s not MS at all.
As Ali said, you may need to manage your expectations. But by saying that, although you may not get an MS diagnosis, but clearly there is something wrong that is causing the neurological symptoms.
Have you heard of Functional Neurological Disorder? Many symptoms mirror those of MS. Have a look at https://www.fndaction.org.uk/what-is-functional-neurological-disorder/
If your MRI does result in a negative result, you could ask the neurologist (I assume you will be seeing one after the MRI) what else could be causing your symptoms.
You do have my sympathy (everyone who is stuck in limbo). It’s a horrible situation when you have neurological symptoms but are unable to get an answer to your questions about the cause.
It’s all information. Even if the results are negative or inconclusive, it’s all a piece of the puzzle that you’ll get to the bottom of in the end. So it will be progress, whatever the outcome, even if it doesn’t feel like it. Well done, setting the thing up. Nothing you can do now but wait.