I have finally managed to collect a referral letter from my doctor for a private (paid) appointment with a specialist MS neurologist, he is diffferent to my current NHS neuro. I have been in (and out) of limboland for the past 12months now and I am starting to think what really is the point with it all?
It seems as though I have putting all my efforts into getting a second opinion or actually getting some answers from a neuro, that now that I actually have an appointment scheduled, I don’t actually now know why I am bothering to attend. I think that now I have become scared with the thought that I might actually get fully diagnosed and started on some kind of treatment.
Currently, I have been given a CIS diagnosis and given a wait and see approach towards the full diagnosis of MS. I have had one MRI scan, this reported back brain lesions and a spinal lesion. A lumbar puncture which came back “normal” but with O bands and a clinical history of MS related episodes going back 5 years now. My current neuro is the dismissive type and I think that whatever I report back refernece possible relpases, he is going to dismiss as not being anything significant. Which he has done everytime I have seen him. I was introduced to a MS nurse back last year, but when I have phoned her, she simply tells me to go and see my GP. I get the impression that unless I am disabled then not to bother her.
I think what is bothering me the most, is the thought of getting diagnosed and starting on a DMD which is going to have some possible side effect. Currently, apart from taking a vitamin D capsule each morning I take no medicine whasoever, apart from the odd paracetamol or ibuprofen tablet for general aches and pains.
Is/has anybody else been really close to getting a full diagnosis of MS and have felt like this? Am I in denial and simply trying to put off the inevitable and moving into an era with my health, where once diagnosed my life is going to be different and is the MS diagnosis going to make my life (work mainly) worst than it is now? (I dont know how it would, but it may/ may not)
To sum things up, and I can’t believe I am saying this but I feel that i’m scared of moving out of limboland and into the world of having a proper diagnosis. What are the positivies to having a full diagnosis?
(Apologies for writing such rubbish on a public forum and not making much sense, but as sad as it sounds, I don’t have any real persons that I can speak too about things, so this is my only way of making head or tail of this situation)
Can anybody give me some positives with regard to getting a proper diagnosis and what the benefits are?, I am pretty sure that I do have MS and my current neuro knows it as well, however, I feel like I have been left on the doormat with no help and rapidly loosing the will to carry on with everything. As for my current neuro and health care trust, everything seems to be down to money and they don’t want to know anything which is going to cost them something.
Thanks for listening