Newly diagnosed help!

Hello I’m Lauren,

I was diagnosed with Ms last week at the age of 26. I hope to meet others who can share experiences and support one another.
A little about my health story :
Last October I woke up without vision in my left eye it turned out I had optic nuritis out of the blue. I was admitted to hospital after being sent to A&E and seeing many doctors that did not know what was wrong with me and I kept being told it was just a headache I was even prescribed antibiotics by a doctor! I had a scan whilst in hospital and my mri scan showed lesions in my brain and spine however there was not enough evidence at the time to suggest I had ms . I had to wait months to see a specialist but was sent for a spinal tap in January that showed nothing. It’s taken 7 months for me to see again without awful blurry vision however my long term sight is not the same nor will it be . I went back to my teaching role within a month of my episode wearing an eye patch for many months. This was a difficult time and I was the subject of many pirate jokes but I learned to adapt and cope in a demanding environment where I was constantly told I didn’t look ill ! . My recent mri scan this month showed a new active lesion in my brain and I have now been diagnosed with Ms. I am meeting with a nurse to dicuss treatment possibly mavenclad? I am very scared as I am a teacher starting a new job in September and am worried about the side effects of the treatment. I am very upset about this
news and I am looking to talk with people who can offer advice and share experiences.

Any advice would be amazing!

I am very sorry that you have had this bad news. It is often the case with MS that it arrives in young adulthood, just as a person is establishing him or herself, building careers and families. The good news is that the highly effective DMDs really can stop RRMS in its tracks. I hope that you find this, and that the treatment does not interfere with your life too much.

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Thank you!

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Hello Lauren,
Welcome. I lost vision in right eye before, due to optic neuritis. It definitely takes a while for the sight to return to what it was. I didn’t wear an eye patch.
I’ve not been on any DMD four years now. Although I’m experiencing another mini relapse this week, I feel I can ride it out with pain killers and physio --if it gets too much then I can ask for Prednisolone steroid to calm it down.
Yes I find the body learns to adapt and cope with having multiple sclerosis.
Try to think positive always, you do get better.

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Hi Lauren, sorry to hear about your diagnosis. When I had my first relapse (double vision) I was given Solumedrol, which is a steroid. I think it should be the standard procedure if the lesions are active. I have been diagnosed in the UK and in Poland, where I believe the system is much more efficient than here in the UK. Do not be afraid to start the medication, I am 33 and 3 years on Tecfidera now, no new lesions so far. Keep it positive and do not wait to start your medication!

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Hello Lauren,

Sounds like there’s a lot of optic neuritis about - that was my way into MS too. I’ve had it since I was about your age, but I wasn’t diagnosed until I was in my 40s - I’m glad my diagnosis was late, as there was very little treatment available.

But nowadays there’s so much they can do to help you, and I’m just switching to a new DMT that cuts out almost all new lesions. My best advice is to keep healthy and active - and keep in touch with all your medical professionals. They’ll help you find the best treatment, and one day soon there’ll be a cure.

We all have medical issues; some of us have MS, some have cancer, some have epilepsy, etc etc … we just have to deal with the hand we were dealt as best as we can.

Good luck with your journey, and accept all the help you are offered. It’s a terrifying diagnosis, though, isn’t it?

Julie x

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Sorry to hear Lauren know how you must be feeling. I was diagnosed in September after my balance getting so bad I could hardly stand. I have just started treatment on Ocrevus which is a infusion you have every 6 months. I had a short hot flush but other than that my side effect was mostly feeling tired for a few days after. Best thing I can suggest is when they give you your options of treatment normally 2 or 3 different ones is to spend a week or 2 thinking on them and doing a little research to see what seems best to you.

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