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.
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.
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.
Best,
JP
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!
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?
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.