@Rowan_carrell 

Last reply

Rowan_carrell

Treatment trouble

Hey all, I could really do with a pep talk at the moment. I developed optic neuritis in summer 2020 which resulted in an eye consultant requesting a deep brain mri, low and behold many lesions found. Jan 2021 consultant neurologist said its most likely ms, scan on my spine and lumbar puncture needed. Due to covid things took time, summer 2021 I was confirmed with ms and the likely hood I'd had it for years but because I'd been diagnosed with fibromyalgia everyone ignored me when I said I was getting worse. Sent to King's college hospital as my local hospital doesn't have the funds nor staff for an ms team. King's referred me to a not so local hospital but I was able to drive to. So now in 2022 I see my new consultant, another full spine and brain mri. Been told now my MS is highly active as within a year I've developed several more lesions on top of the many I already had. They want me on a new treatment called kesimpta, however 2 months later I'm still waiting for this to be delivered to me, only to find out that the delivery company has lost the prescription. I'm starting to feel like I'm never going to get on my treatment and I'm just going to keep getting worse as nothing I am doing is slowing down or making any of my current problems better 😪 Just after either advice or just some support from people who understand. Sorry for the long post and rant, just after 2 years of faffing I'm loosing the fight at present moment in time
@Lulabella

Oh sweetie I hear you. I've had copaxone that didn't agree with me then ocrevus I have just been informed has had zero affect on me so I'm going crazy too. I'm waiting for another brain scan appointment to come through. It's just frustrating and no one truly understands what we are going through x

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@Runningonempty

Breathe hun……just breathe. It always takes time neuro’s mantra ‘diet, mindfulness and exercise’ any other symptoms?u can talk to ur gp for treatment checkout ms trust, ms uk and ms society for advice DONT GOOGLE u will scare urself to death & ms is very individual in fact anything neurological is so ur experience will be individual too other ppls stories don’t have to be yours @lulabella is right it’s scary & frustrating but u will get there promise. Vitamins D3, folic acid, B12 etc do what u can for u while u wait for the meds.