MS Society UK | Forum

newly diagnosed, medication and acceptance advice needed

Hi y’all, I’m Tessa. I’m 21 and I was diagnosed about a month ago after receiving a MRI due to a persistent visual disturbance brought on by a headache. The visual disturbance is gone now, and I currently don’t have any symptoms (that I’m aware of, at least).
I’m working with my neurologist to find a medication but looking at the list of side effects for them is so terrifying. I guess I just don’t know how the process works at all; if it’s easy to switch if I find that I hate one (and how that will affect me), or if it’s possible that I just never find one that works for me. I am super grateful to be in a functional state, (please forgive me if it this post comes off as insensitive to those with more severe symptoms), so I’m just hesitant to take something that may alter that. But I also know someone who does a lot of homeopathic remedies that work for her! It’s just so hard to know what will work, and it seems like there are so many risks. It’s also just really daunting that I’ll never know if/when I’ll develop symptoms. I kinda just needed to get that off my chest, I feel like I still haven’t really come to terms with the diagnosis yet. If anyone has gone through a similar through process, I’d love to hear from you.

Hiya Tessa!

I’m so sorry you are struggling with this!

I’m 25 (24 when symptoms started), are you UK based? Also what sort of visual problems did you face?

I’m struggling to get any definite diagnoses yet and definitely no medication although today I was diagnosed with Trigeminal neuralgia and have got medication coming for this as its on order. Just wondering what tests you have had and how many lesions you have had and where? If you are ok with answering. I am only diagnosised with CIS at the moment but with the pain and symptoms I’ve got I am hoping for some reason behind them even if it’s not MS!

Again so sorry you are going through this. Always here for a message if you need anyone.

Hi!

Thanks for reaching out:’) I’m actually based in the US, I think this forum was just one of the first ones that showed up when i looked it up online haha.

My visual problem was a “dark spot” in my right eye, sometimes there would be wavy lines, and it had a specific spot that it would stay in my field of vision. From what i’ve heard, it seemed to be similar to a migraine aura, it just persisted for months which I guess isn’t normal for migraines. My first MRI showed one lesion in the left occipital lobe (which makes sense why i had a visual disturbance) , and then four months later i got a second MRI that showed 5 lesions, and the progression of the original one. I went on an initial methylprednisolone treatment for those. They were going to do a lumbar puncture, but decided that it was too invasive of a procedure since my MRI’s showed pretty definitive evidence that it was MS.

I really appreciate the support! I’m sorry that you’re going through a new diagnosis as well:( I hope you can get some closure regarding your symptoms.

That’s ok everyone is more than welcome from near or far!:slight_smile:

Oh bless, that seems awful! Luckily I had no further leisons on my brain MRI so I was able to keep the diagnosises of CIS. I’m not sure how MS works with medication but like you I was told about DMT’s and then searched them and thought oh my dear as some of them have some worrying side effects but luckily my Neurologist didn’t want me to take any as couldn’t be 100% sure MS was the final diagnosises.

Stay strong and keep positive is my best advise. I wish you all the best!