I have been reading your posts for several weeks now and thought it was about time I joined this wonderful community.
I have recently been diagnosed with PPMS. I have been 99% sure since May when I saw an absolutely lovely Specialist Registrar here in Reading I was referred to the Neurology clinic in November 2010 after 5 years of subtle symptoms and red herrings during which time an underactive thyroid was diagnosed and brought under control as was a lower back problem. And yet I was still plagued by weird symptoms. My left foot continued to drag and the limping became more and more pronounced and I noticed weakness in my left arm and leg.
Various tests were carried out. A brain scan was inconclusive and evoked potentials negative so a lumbar puncture was recommended. As I had suffered a blinding headache which lasted for 6 weeks when I had a steroid injection in my back I was dreading this but I needn't have worried. My lovely registrar and a very nice nurse were gentle and proficient and it was a breeze.
Sadly the results came back positive and this, together with a thorough clinical examination that clinched the diagnosis. The doctor's follow-up letter confused me a little so when I asked my MS Nurse if I should ask for a private MRI on my spine she spoke to the Registrar and the Consultant Neuro (an MS specialist) and they agreed there was no need as they were confident of the diagnosis. So I knew what was coming when I went to see the consultant a few weeks ago. He was very nice but couldn't really tell me anything I didn't know already - I was well-informed thanks to this site and that of the MS Trust. Nevertheless it was a milestone. It's official - I have MS. Abit of a bummer but there you go.
So now I have some dilemmas - loads actually but here are my top three:
- How to 'come out' - I had told only a handful of people since May - husband and family and a few close friends. But now it's time to inform others. I have started mailing other friends and today told my Pilates teacher as I find some of the exercises difficult. But next week I plan to broaden this further. I want to tell everyone in the small office where I work 2.5 days a week. Only one person there knows so far. I am not worried about being drummed out of the job - it is a pretty caring organisation and recently made significant 'reasonable adjustments' to accommodate a severely deaf young woman. Rather I am worried about people getting upset. Any thoughts on how to break the news without freaking people out? I also run my own part-time business - as a coach. Is anyone out there self-employed and have you informed your clients?
- I need to claim on my critical illness insurance but I am worried that I had one episode of numbness 21 years ago that was dismissed by my GP as a trapped nerve. It disappeared and I had no symptoms that could even remotely be connected to MS for over 15 years. Will they try to wriggle out of paying me? I didn't keep a copy of the CI application but think they asked only about numbness or tingling in the last 5 years.
- My final, somewhat trivial, dilemma is finding nice, sexy flat shoes. I can't be trusted in heels any more other than a couple of pairs of kitten heels that I can wear indoors if I don't have to walk far. The good news is that my local charity shop will have a bonanza day when I can get down there. The bad news is that I feel like a frump in flat shoes. I guess being quite elegant has been part of my identity and I now need to reinvent that. I also work a couple of days a week in a corporate environment where I need to look good. I do have one pair of black patent knee high flat boots that look very smart but have just got back from the shoe repairers who tell me they can't be repaired - I have ruined them from constantly scuffing my left foot! RIP lovely boots and roll on the sales! I guess PWMS need to keep adjusting their identity and maybe in a few years time I will look back and wonder what on earth I was on about - but this is where I am right now...