Feeling really scared at the moment
Hi everyone. I was finally diagnosed in November with RRMS after my lumbar puncture. I had a huge flare up January 2023 and that set ball rolling. I had 5 spots and 2 are not very small. I had a huge flare up in November and just over it now. I lost about half my sight and balance and motor skills. I have got sight back this last week but I'm still dizzy. I had a brain and eye MRI and I got letter results today. It shows new spots on the brain. Doesn't say how many but has 2 areas newly damaged. So that now minimum 7 spots. I have no new date with neurologist or opthonurologist but I start treatment finally on 31st January. I'm feeling so scared right now. No one gets this better than you lovely lot. Rumors I'm gonna die in the next Yr are circulating n my kids have now got worried. I seem to be progressing fast as my nurologist explained in November. I have fab MS nurse but not available often as only 2 in the hospital for 70miles. I don't know what all this means but I have read that area of new damage is motor skills balance sight speech etc. I honestly don't know how much more I can handle at the moment. Stress is unreal. Just needed to offload and any advice is grateful before I fall apart. Thank you for reading. I hope your all OK.
Hi Charlotte. Really sorry to read this. I have a number of permanent symptoms and had my last major relapse 18 months ago. This accelerated the treatment path and I have been administering kesimpta for almost a year now. The good news for you is that most treatments are highly effective and, once on them, the nurses just shrug, smile and tell you to expect no further decline. The drugs have improved such a lot and you will feel so much calmer when you are on them. Having said that it sounds to me like your decline and symptoms have been faster than mine so I hope you get started soon. I can’t say it’s easy living with the symptoms I have now but it does work and any sense of early death seems very distant. I’d say my own mental health is my biggest enemy and it’s so important to rationalise stay calm and change your life to make it manageable with your symptoms. Here if you need someone to talk to
Sorry to hear about your MS. What treatment are they putting you on ? Think you need to speak to your MS nurse ( I know its difficult to speak to them , its the same for most of us) maybe they can put your mind at rest and stop those negative faults - (we all have them in some way) : )