I am new here and glad I have found this forum. I was anticipating a yes/no diagnosis after my 2nd MRI, but from reading through the post, I think that was a false expectation of mine!
My first symptoms were loss of sensation on my face and head, tingling fingers along with sporadic fatigue and dizziness over 2 months. My first MRI came back as showing lesions on the brain and the second showed lesions on the spine too. My doctor says ‘most likely MS’ and I am going for a lumbar puncture next. I moved from the UK to Amsterdam so very lucky that waiting times are typically no more than a few weeks! But mentally I am being driven crazy with the uncertainty, the ‘most likely’ and the lack of a definite diagnosis. Does/Did anyone else struggle with this part?! Should I expect a diagnosis after the lumbar puncture? I have anxieties anyway like we all do, but I would love to hear if others feel this way and if you can tell me about your experience!
Hi, it took 22 years to get my diagnosis! I saw 16 neuros at 4 different hospitals. They saw no lesions, even though I had very typical PPMS symptoms and lost mobility early on.
I finally got myself referred to a specialist neuro hospital in Liverpool and neuro no. 17 saw 2 lesions on my spinal cord.
It isnt something I’d like to repeat.
I am now settled in my mind and have Jesus looking after me.
Nearly two years and still waiting! It can, if you let it drive you to distraction. I appreciate they are busy and there will be more pressing cases than me so I have to try and live my life and look after my body as best I can whilst I wait. It’s sounds like Dutch care is moving quicker for you than here so I hope you get some answers soon. Expect the unexpected MS can be a tough cookie to diagnose.
It is usually a difficult and worrying time. It does sound as though are well on the way to some clarity. My diagnosis process was many years ago, but it sounds s little bit similar to yours and it didn’t take very long - a few months. I don’t think MS is ever very easy to diagnose, but it isn’t always terribly difficult either.
I hope my process continues to be similar to yours and that I have some clarity within a few months! I’ve been really lucky with the speed of tests etc so far, so I remain as positive as I can be. Thanks for sharing!
This is a good lesson for me to take on, to expect the unexpected! And to keep a good general level of health whilst we wait Thanks for sharing!
Wow, what a journey you’ve been on. I am glad you’ve finally got the specialist and sorry to hear of the length of time it took to get there. God bless!
Thank you so much for sharing your experiences with me! Sounds like the road to diagnosis is a real spectrum and different for everyone. I am really blessed to have gotten this far this quickly. I feel reassured that I am not alone in trying to figure all of this out!
Just wanted to come back to this thread with an update - I went to the hospital today for my lumbar puncture, but the neurologist said it wasn’t needed (but it was my choice) because he was able confirm a diagnosis of RRMS based on my MRI’s! I felt such a relief of mental pressure in that moment, happy that for now, all my questions have answers
Next steps will be discussing treatment. Again, feeling lucky my healthcare is moving so quickly.
Thanks for reading!
Welcome to the club. It’s never great news, but there is something to be said for clarity and a treatment plan in the offing. Uncertainty can be very wearing, and you need to know what you’re dealing with before you can start to work out the implications, don’t you?
Thank you for the update. You must be exhausted after all that. I hope you can give yourself a bit of time and space to let the news settle in.
Exhausted is the word! The relief of the diagnosis gave way to reality quicker than I’d hoped. But indeed, knowing what you are facing is half the battle so I am better equipped for the next steps. First on the list is to process the whole thing! Thank you for your kind words