Hi I’m a 22 year old woman and have been waiting for a diagnosis since November 2020 and I’m starting to panic.
I went in to see my neurologist last week. I had already exepted the possibility of having a diagnosis of ms through my own research and looking at my symptoms and medical history before all this started.
But this has been flipped on its head now as when I saw my neurologist instead of getting the answer I was expecting I was informed it could be one of 3 things.
MS being one of them and a quite aggressive form. The other 2 options where very rare and quite newly discovered the first one was MOG which has a better prognosis over the MS diagnosis and the other i didn’t remember/don’t want to remeber the name of as my neurologist wouldn’t go into details but it is a verry poor prognosis and allot worse than MS.
They have sent my blood to Oxford for testing for both these incredibly rare things and it could take up to 6weeks if not longer as they do the tests in batches. I’m so frightened about the outcome of the test.
I’m scheduled for a phone call on the 26th of May with my neurologist to discuss my diagnosis if the results have come back from the blood tests at oxford or if the results from my spinal fluid show the bands like in MS basically this makes it more clear its MS where dealing with and most likely not the other 2 things.
I just wanted to ask if anyone els has experienced anything like this? And what you did or would do in my situation waiting for an answer? I know some people have waited allot longer than me for answers so I should be counting my blessings. I just keep getting caught up in the chance it could be a super bad outcome.
I am so scared and anxious, I’m just starting my adult life after university and I feel like I am going to have everything taken away in the blink of an eye.
Sorry my first post on here is so down heartening. I hope I can be more positive in the future thankyou for reading x