After a couple of years of something not being “right” but never adding it up that it was all connected I got diagnosed on Wednesday with MS. I’m a 47yr old female.
After one side of my face dropped on Monday and my work friends took me to a and e at the local hospital as worried it was a stroke. I had tests such as bloods, heart, physical, mri and ct scan which showed lesions. I was told the good news was it was not a blood issue or a tumour but the bad news is it is neurological. I was referred to Preston neurology which has an expected 12-18mth waiting list. But the an and e consultant said he would try and get the my local hospitals neurologist to have a look at the mri/ct etc to see if that would speed things up for me.
Two days after my a and e visit I got a call from the neurologist asking how quick I can get to see him as he has finished his clinic and has some time available to discuss my tests in between writing up his paperwork.
I got to hospital within 20 minutes and was sat down with him giving him details of all the things that weren’t quite right with me over last couple of years. So my history was taken, test results discussed and explained resulting in a diagnosis of MS… within three days of a and e visit.
So my odd response is one is feeling thankful it is MS. I had three days of the unknown (my heart goes out to everyone in months/years of unknown limbo). In those three days I went through every emotion and scenarios from death is imminent to really really scary neurological illness such as mnd, even human cjd from an iffy beef burger in the 80s! I also threw in early onset dementia (I suspected for months I might have this as I was confused of words and couldn’t remember things ).
The neurologist I’ve seen specialised in MS. I have a treatment being put in place. A couple more tests are needed such a spine mri. Im having a MS nurse allocated.
But I am thankful! I am very scared and I know I haven’t anywhere near processed it but I was wondering if how I feel is normal?! What advice would you give for dealing with the emotional rollercoaster I’ve just started? I’m focusing on what I can control and trying to accept the unknown and trust the professionals with do their job well.
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Hi @Kitgeo, so glad to hear you got answers but also so sorry anything is wrong with your health at all. Really horrible that you’ve had lots of confusing and scary symptoms which have made you had to process how your life would look with a variety of conditions.
I’ve also been diagnosed recently, and had a similar experience of going straight to A&E to be investigated for conditions which would immediately affect my life in very instant/very dramatic ways. After an MRI, MS seemed the most likely. I remember walking away from that appointment feeling strangely relieved. I left voicenotes for myself after appointments, and I almost sound happy…! In hindsight, I was also just a little surprised and in shock. Since you’ve had such a fast diagnosis turnaround in the last few days, I wouldn’t be surprised if you need a second for news to ‘sink in’.
So I completely get your feeling of relief. But also feeling confused about why you feel relief! Without being corny, don’t think there is a ‘right’ way for you to react. All days are going to be massively different, and it’s going to be very personal to you. With me, it depends on the day - I’ve definitely also had my share of sobbing in the shower moments too, feeling very scared and like it’s all incredibly unfair etc, even if on the whole, I’m lucky that my life still feels relatively normal. Someone I spoke to with MS recently described it as a ‘snowflake’ condition since no two cases are the same, and it affects everyone so differently, so of course everyone is going to have wildly unique experiences/feelings.
For me, since life is inherently risky and who knows what you’ll be diagnosed or will happen to you at any time, it feels a bit easier to live with a condition with a treatment plan, no fixed timelines etc as well as a ‘heads up’ for difficulties which might be on the horizon. But talk to me if more symptoms kick in and bet I’ll feel very differently! And to other people, perhaps the unknowns psychologically might be complete hell. I’m trying to see it as helpful that I’ve been diagnosed since it helps me plan for the future a little more (e.g. if I move, looking at accomodation which is as accessible as possible etc). But some days, you’re also allowed to just feel completely wretched about the whole thing.
So sorry to ramble, but sending a lot of good wishes your way, and definitely no wrong way to feel! If you keep feeling relief, that’s absolutely fine. It’s also completely fine if on some days, you feel like the most hard done by person in the whole world. Feel it all!
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Hi there,
I think you’ve had some great advice and just wanted to echo that you may feel differently on different days and at different times .
I think these kids of things can take a number of months to process.
How are you getting on now?