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Newly diagnosed and wanted to get involved!

Hey!

My name is Jade, I am a 28 year old Australian currently living in Sweden with my partner when I was finally taken seriously enough be referred to a neurologist.

My symptoms began around 2017 starting with blurriness/shadows affecting vision in my right eye. It didn’t really interfere with daily life albeit quite strange and unnerving. My mum took me to the ER to get checked out regardless and after having a light shone in my eyes I was discharged with no follow up. The blurriness eventually subsided and I didn’t think much more of it. Later in the year I experienced dull pain in my chest and tingling down one side of my arm - went to the ER, had an EKG, was discharged.

After moving to Sweden with my partner in 2019 I presented to the doctors with chest pain, was given antacids and sent home. During the summer of 2020 I pulled a muscle in my neck and the blurriness in my right eye returned, after speaking to the health helpline, they advised an eye test (which having done 3 years earlier I knew would be of no help). After exhausting all avenues I returned to the doctor with the same nagging symptoms, sounding (and feeling) like a broken record with hypochondria. After going back to the doctor, seeing a physio for my neck I was referred to an eye specialist who on listening to all my symptoms finally decided it needed further investigation. He described my symptoms as something called ‘Uthoff’s syndrome’ - where symptoms are made worse by increase in temperature.

This was really the golden ticket in my journey to a diagnosis as when I had my brain MRI and lumbar puncture a week ago, it became clear from the many lesions on my brain/spine that it was MS, and had been for almost 5 years. Although this outcome is not the ideal one for anyone - the relief is immense. I feel like all those years of feeling ‘off’ made sense and even though there is some sadness (particularly for my partner) I mostly feel frustration at the way healthcare (universally) is unwilling to probe deeper into our very real, very significant health complaints. This could have been spotted 5 years ago right after the first symptom…but the important thing is it has been now…and the only way is forward!

So this is my story, I really look forward to being part of this forum as I already feel at home! :slight_smile:

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Welcome, Jade! I completely agree with you about the doctors. Had someone taken my complaints seriously, I would have been diagnosed 40 years earlier! It IS a relief to finally get that diagnosis, if for no other reason than that you can say “See! I told you so!” to all the people who called you a whiny hypochondriac.

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Thank you for sharing your story Jade.

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Hello,
My Name is Jane,
I do find things hard at times, but hay we dont have a death sentence,. The best advice i can give you is take your time. Dont try to be perfect. I paint. I play the guitar and struggle with all sorts of things. If you stuff up with things, does it matter. Cherish each morning when you open your eyes. Did i tell you i have had breast cancer. You can get through anything, if you want. Learning to live with MS sucks at time and its up to you how you handle it. I have a gut feeling that you will do ok.
Jane x

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This was such an uplifting message, thank you for sharing you struggles and positive outlook. You know what? I think it will be okay :slight_smile:

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thanks for the revelations

Hi Jade thank you for your moving message l hope that you receive all the care you need. Iam 59 and was diagnosed a year ago.

Hello Elwn. Welcome to the forum.