Last reply 7 months ago
A year after being diagnosed

Hello, it’s been just over a year since I was diagnosed with MS and I’d like to give an insight on how me and my body has changed in that year.

My first real noticeable symptom was double vision. I remember I was traveling home on the bus, just looking out the window then all of a sudden I started to see double, I was like wtf is going on here, rubbing my eyes thinking it would go awayπŸ˜‚πŸ˜‚ I didn’t think much of it until a week later when it was still there. So I went to visit my GP who then sent me to the eye clinic with 6th nerve palsy. Spent the best part of 10 hours at the eye clinic who couldn’t find a reason as to why this was happening, blood tests and CT scan on the day came back normal. So that’s when I was referred for an MRI scan, when the results came back I was seeing my orthoptist who leaned towards me having MS so he referred me to see a neurologist. That moment was super awkward, because after there was a lot of long silences and him just looking at me. I will always remember him saying to me ‘i wouldn’t like my son to have this’. 2-3 months after this appointment I seen my neurologist who then diagnosed me with RRMS. It wasn’t a clear answer tho, ‘yes you have ms’ it’s more of a ‘do you understand what this means’? Etc. Which doesn’t make things easier.

It’s been overwhelming I have coped well with everything tbh keeping myself busy and active. It’s been filled with a lot hospital appointments, mri scans with each one picking up new activity so I hope the treatment im receiving stops or slows down activity, blood tests and receiving treatment. Which has been draining. I have met some amazing people on my way. Lost connections with friends. A lot of the time it feels like I’m on my own, it could be my fault and it could be theirs or maybe a bit of both. After my third MRI of brain and back I was offered 4 treatments to choose from, Tysabri, Ocrevus, Lemtrada and Mavenclad, after given information on each one from my neurologist I was left to do my own research and to pick which one was best for me. Which was an extremely difficult choice. My nurse did explain each one with the benefits and risk factors, it was so much to take in and it literally went in one ear and out the other, but after a few weeks deciding I finally went with Ocrevus and im happy that I did. The treatment reduces and slows down your b-cells which weakens your immune system and leaves me more vulnerable to infections. I’m sure many reading will already know this but there will be others who don’t. So, I’ve been living cautiously for the past month or 2 so I don’t pick up anything unwanted and so far I’ve done well. I did pick up a respiratory infection which cleared up after a couple of weeks. I have to get infusions once every 6 months. (I’m now free of hospital appointments for 6 months when im due to receive my first full dose 600mg of Ocrevus). It’s not a cure but it slows the disease and helps prevent relapses.

I don’t think I’ve had a relapse in this time buts it’s hard to tell what is and what isn’t a relapse. Ive lived with constant double vision for around 8 months of last year, I still have the double vision but it’s not as constant as it was previously. I’ve had a serious loss of cognitive function, it feels impossible for me to listen to what’s being said by anyone, it just doesn’t register in my brain, so it’s very hard to learn new things or find new interests because I just lose focus and concentration. Even talking doesn’t feel the same as it used to because I hesitate on what to say or just feel really anxious that I end up mixing up my words and not make any sense. My short term memory is awful. I’m quite heat sensitive, it’s the beginning of autumn but it still feels like I need to dress for summer, a simple walk can leave me feeling very over heated. I’ve experienced new symptoms, numbness in my back, nerve pains throughout my legs, tightness in my neck. My balance in the mornings feels off. Sometimes when I think back on my symptoms I think have I had ms longer than I think?

Every day isn’t like this. Some days are actually amazing and its like I don’t have MS at all and there are other days when everything is going wrong. I’m still learning. I have to stay positive and continue to grind, continue to do the things that I love! Of course it has changed me but deep down I’m still the same person.

Thank you for reading 😊

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7 months ago

Hello @anonymous, clearly you have a positive outlook which is the best ally you can have. I have been diagosed almost three but still feel I am learning all the time. Also, learning not to be complacent, and to accept change on a daily basis. My life has changed a lot as a result of being diagnosed. Most a lot of that change has been the result of me steering it. Changing diet, changing work patterns, moving to a nicer place. But you have to be in the right mental state to do these things and that’s where the most work is required. Good luck with your journey x

7 months ago

I was diagnosed with MS 15 years ago when my daughter was 2. Prior to that I think I had diagnosed symptoms. I was an avid horse back rider and competitively jumping and training dressage. Having a kid kind of cuts out the time and money I had for that πŸ˜‰ but replace it with a different kind of wonderful.

Then I was diagnosed with MS. No real change until my recent decline where I started needing a walking stick. I also had a hip replacement a couple of years ago so the two things added together put me where I am. I will have my first cognitive function analysis in about a month at the Mayo Clinic, Rochester, MN USA. They are about the best in the US. I was there a month ago and they basically agree with my local neuro that I am moving from RRMS to SPMS.

I don’t think that MS impacted my life much this entire time. What it has done is made me more of a “planner”. I am kind of conservative and an accountant so we did things like buy a smaller house initially that we could pay off within 10 years. We then lived in that house and put an entire mortgage payment per month into a retirement account in addition to the max we could save as an employee at our companies.

This allowed my husband to retire before he was 40 (he has UC so the stress of working was really impacting him) so he could fix up our initial house for sale and then plan for and build our next house. The design of this second house is very different than the first house which was a split entry. This house is multi-level but everything I absolutely need is on one floor. The master bed/bath, living room, kitchen and laundry is all convenient with only two steps into the garage. It is designed that a ramp can be added to the garage if needed and a stair glide system into the basement which has the exercise room, media room and big patio door that will open to a nice open patio space when it is finished.

So- knowing that I am set up for the future is a great piece of mind. I can still do stairs but with some difficulty and not too many times a day πŸ˜‰ It may become worse over time but I have a plan.

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