MS unexpectedly gate crashed into my life in the New Year following vision issues.
Despite having no prior history (CIS etc) I have been officially diagnosed. For now at least my symptoms have resolved but emotionally I feel like I’ve been hit by a train. I feel like my wings have been cut. I feel like someone has stamped on all my hopes, dreams and plans which such violence that there is nothing left of them and they are lost forever.
Anyway, right now I am raging war against the NHS. While I recognise this is my way of trying to cope I am quite serious about getting DMD’s. The neurologist who diagnosed me said it is too early to tell what type of MS I have and that I may never need DMD’s. He wanted to wait and see. I wasn’t comfortable with this and given the speed my symptoms came and went I would argue I have the RR type. He had now referred me to someone who can assess eligibility and I’m waiting to hear when this will be.
Since all this has happened I have researched MS to the point of obsession and consider myself pretty educated. I had my first meeting with the MS Nurse yesterday which wasn’t very helpful to be honest and did nothing to reassure or clarify anything to me.
I know I am splitting hairs at this point but I feel my diagnosis should technically be a CIS and therefore probable MS. I asked the Nurse and she said Neuro’s can use there discretion and that’s fine except I cant help but wonder if I have been diagnosed with MS to ensure I fall outside the DMD criteria for both CIS and MS. I understand meds can be available following a CIS but before an official diagnosis. Since I have been diagnosed I assume this will not apply to me and therefore I am not entitled to meds until I have a second attack. This makes me very uneasy.
I asked the MS Nurse if I am able to self fund DMD’s and she said this isn’t an option either as they are only available through the NHS. Is this right? Surely if I have a diagnosis and I have the means to pay this should be an option.
I know DMD’s are not wonder drugs (clearly) and I don’t relish the thought of injecting god knows what into me either but I will push for what I feel is right for me. Can anyone advise please?