Hi all 
3 weeks ago I had a head MRI arranged by ENT because in May last year I had 3 months of dizziness, vomiting and double vision.
6 days after my first MRI I had a call to go back and have another head MRI with contrast so at the point I knew something was up. That MRI was on a Sunday and by the end Thursday the following week my ENT consultants secretary called me to arrange an appoint for the Tuesday (yesterday).
I was shown my MRI results that had lots of what he called white blobs that were bright white and one of them was very large. He informed me it was very likely MS and that the Neurology team were meeting with the MDT that afternoon to discuss my case and that I would hear from them fairly quickly.
I feel totally in limbo & shock.
I guess my questions are at this point is, what next?
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Hello, I don’t know for sure what next but if the view of the MDT is that MS seems likely then you might get a lumbar puncture ( im not sure if this is now standard practice) and then an appointment with a neurologist who might ask a few questions and talk about Disease Modifying Drugs .
Depending on what you hear next then before any appointment with a neurologist have a look at the range of Disease Modifying Treatments of which there is an increasing number . Probably not worth trying to rember the details of each treatment at that point but get yourself a general picture. In very general terms they can be described as low , medium and high effective drugs. I’ve been on a low effective one (Avonex) for around 19 years. They all carry different side effects some of which can sound scary e.g Avonex potential side effects include liver failure and heart failure but such things are rare and all I get is 24 hours or so of feeling a bit rubbish/ grotty
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Thank you for replying. Yes, I was called this morning by a lovely Neurology nurse. They want to do a lumbar puncture and a spinal MRI. The MRI should be done within the next week or two and the Neurologist will call me after he has the results. As for the lumbar puncture, they have a backlog so it likely wont get done till September and the results take up to 12 weeks to come back. That shocked me.
It all moved so fast and then they drop a bomb like that and it slows down to a long process.
They were very nice on the phone though and gave me the direct phone number and email address so I can contract them any time.
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Poor you, I know exactly what you mean by feeling like you’re having all these bombshells dropped on you one moment, then it all suddenly becomes a bit of a nasty waiting game. Horrible when you have to spend a lot of time hand-wringing and waiting in limbo!
Sounds like you’ve had a really rough time with lots of nasty symptoms for so long, but glad you’re on track to either rule out/get a diagnosis for MS. It helped me throughout my journey to let myself feel absolutely horrible anything was wrong with my health at all, but also happy that the NHS exists and I could get these investigations done for peace of mind, whether it turned out to be MS or not. Keeping a symptoms log and writing down any questions that I had during the run up to appointments also really soothed me.
Glad you have a phone/email contact too, I used that a couple of times and it was always so helpful, so definitely don’t be afraid to call or write in if you ever have admin questions etc.
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How are you getting on now Krystal? Has there been any progress?
Hey there, Thank you for checking in and asking.
I started Kesimpta back in August. Luckily for me it was all processed really fast.
I Since found out the reason it was all done so quickly is they actually thought I had a rather large brain tumour to begin with.
While having an MS diagnosis is not the best, I feel some validation at last. I said to my GP over 10 years ago that I thought I had MS and they brushed it off and said I just had Fybro.
I hope you are well 
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Blimey, I bet that was a lot to process! At least you have some clarity now and are on treatment. How are you finding it?
I started Kesimpta in December and so far, so good.
Wishing you all the best
Blimey, I really appreciate your kind words! It definitely has been a lot to take in, but yes, it’s a relief to have some clarity and to be on treatment now. Thanks for sharing your experience with Kesimpta — it’s good to hear it’s working well for you!
I’m still getting used to everything, but I’m hopeful. Wishing you all the best too, and I hope your treatment continues to go smoothly!
Take care,
Sameena
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