Newly diagnosed
Hi everyone I'm new on here I'm 34, I reckon I'm I've has ms at least 10 years and did not know had a episode of optic neuritis 10 years ago fifty per cent vision reduction in the eyes went to every optician , eye specialists and they saw nothing it cleared up on its own after 2 weeks also had a mri up showed nothing, I put it down to stress but always wondered what that was that had happened to me ,in the last 10 years I've just had some tingiling in the feet some numbness but just thought bad circulation nothing major , until this year Jan 2018 I got spasms head to toe and tingiling everywhere, that lasted a couple months then came back in May, that's all died down a lot those symptoms, I got diagnosed end of October 2018 with Ms it was a relief as a lot of my doctors he palmed me off saying it's just anxiety but I knew it was not ,I thought it was motor neurone curtesy of Google lol then started feeling it was possibility ms. The last month or so my vision is slightly off almost like I'm tipsy ,no way as bad as the episode 10 years ago and a dizzy feeling, I've met the ms nurse twice who seems to really know her stuff and said steroids she would not give to me as I'm not that bad, she said norm these things subside on there own, I will be seeing the Ms neurologist for the first time mid Jan, I feel I've been waiting a long time after been diagnosed 3 months to see him have tried everything to get earlier appointment and nothing, is that a normal waiting time,? what can I expect at the first consultation?, am I relapsing or secondary ms? and how long did it take you all to get on medication once you had the first appointment? and has medication helped you ? IM trying to stay calm but I'm frustrated that every appointment seems to be such a wait, thank you sorry for long info X
Hi @melmel1 I had to pay and go private for my first appt (same consultant that I get under the NHS). In order to speed up the prescription of Tecfidera, I paid for a second private appt. If memory serves I was taking Tec about 3 months after initial diagnosis. Drug seems to be doing its job. No perceived relapses since starting Tec. In my experience length and subjects covered in consultations to a large extent are determined by you. I would go to the consultation with a list of questions you have had time to consider. Neurologists are extremely busy people(I don’t need to tell you that as getting an appt is so slow!) you may present to them as a very straightforward case, as such the list will ensure you get what you need from the consultation. They may refer you to your MS nurse on some matters, but there’s no harm in asking. All the best Dan
Thank you for your reply,I have a appointment mid January, IM going to ask him what happens next and if he has a massive wait to see him again after my January appointment I was thinking this crazy idea of somehow getting my details passed on to a private place and some how getting the medication from them then goin back to my nhs one because I feel this waiting game is to long and it's really concerning me. Xxx