In autumn 1997 I saw a brilliant general physician/rheumatologist (known as Dr House to many of his medical students in the hospital where he teaches, so I heard!). I’d had a lot of very difficult symptoms after coming back from a two week holiday in Cyprus.
Had all the tests and he told me I had fibromyalgia. Had never heard of it at the time so swotted up on it. It made sense.
When I was dxd with MS at the end of 2014/beginning of 2015 the (MS) neuro thinks that the MS probably dates back to then. He did say that now is the ‘best’ time to get MS (if you can say that) as there are lots of treatments for it and back then there weren’t. My late sister-in-law (who passed due to MS complications - she was very very ill and disabled at the end) was about three years into her MS dx at the time. My kids were young, I was in my mid-forties, so in a way it is just as well that I didn’t know.
Thanks for the comments. It’s just so frustrating isn’t it? When you know that your ‘normal’ isn’t actually ‘normal’ at all, but the doctors can’t see past the label they have already given you. All these horrible symptoms and weird sensations shouldn’t be lumped in with everything else.
I guess I’m just having a bit of a crap day. I woke up to the left side of my face twitching quite dramatically; to the extent that my husband could see it, so I wasn’t going mad. It’s continued on and off all morning and my left arm feels heavy and weaker than normal and my left eye feels achey. I went to the post office to buy a box for posting a gift and struggled to hold it while I put my change in my purse. I couldn’t manage the zip and felt so stupid and annoyed with myself. Then I manage to drop the box, which was flat packed, twice before I got home. My co-ordination is all over the place.
I really do want to go private, but the consultant I’ve been referred to doesn’t have a private clinic and he is an MS specialist, whereas the only person I could see doesn’t have an NHS clinic at my local hospital and I really don’t want to be passed from pillar to post. So I will probably just have to be patient and wait until December, barring any dramatic developments.
Thanks again. I hope you are all doing well and Gilly good luck with your results.
DD10 I don’t know what area you live in, but i was just saying in my post how quickly I’ve been seen through the NHS because I initially went to a+e with my symptoms. Since the end of Jan/Feb this year I have had at least 2 neurolgist appointments, evoked potentials tests, attended an eye testing clinc and had follow up MRI and ct scans all as an outpatient in my local hospital. I am in Northern Ireland. If your symptoms get extremely bad I’d forget the GP and take myself to A+E. They’ll asmit you and do the proper tests. You’ll get MRI results back in days and if symptoms are bad enough youll be admitted to neuro department. Some times it takes a worsening of symptoms and you to take yourself to A+E for you to be taken seriously.
Hope you feel better soon anyway. Ive been referred to MS clinic in a new hospital - i really hope Im not waiting more than 6 weeks!
Thanks MissMishell. I have considered A&E many times, but having worked in the department, I don’t feel my issues warrant a visit - yet. I’ve discovered that a new doctor at my local surgery has an interest in neurology, so I’m trying to get an appointment to see him, just for a different perspective and for a fresh pair of eyes to look at everything. I almost feel like I can see my own GP’s eyes roll as I walk in these days and I don’t feel like I have the strength to argue with his so-called ‘reasoning’ any more. I’m hoping a chat with this other doctor might at least make me feel as though I’ve been listened to and taken seriously for a change. As for the neurology appointment, I think I’ll just have to wait unless anything dramatic happens in the meantime, in which case I won’t hesitate to seek help. Thanks again and I hope your appointment comes through soon. DD x
Soooo, my appointment that should have been with an MS specialist has now been brought forward from 7th Dec to 28th Nov BUT the consultant has been changed. The reason I didn’t go private in the first place was because I’d been referred to an MS specialist and didn’t want to be passed from pillar to post. Can’t find any info about the consultant I’ve been referred to (seems he may even be new to the trust - deep joy!) and of course the letter arrived on a Saturday so have been irritated all weekend! Will call tomorrow to find out who it is and I suppose I should be glad I’m being seen sooner rather than later, but had I known this would happen, I would have been seen weeks ago!
Quick update. Called to ask re appointment change and was told it was ‘only a generic referral, so it didn’t matter who I saw’. This makes me feel that my GP has done a grand job of explaining my problems - not! I am so fed up of being treated like this isn’t in any way important. It is important to me. I am thoroughly miserable and so disappointed in the system that is supposed to help me:
a) find out what is wrong
b) make me feel better or treat me
Having worked in the NHS for most of my adult career, I feel so let down. Maybe it’s just me, but I have always treated my patients the way I would like my loved ones to be treated; with respect and a genuinely caring attitude, regardless of how stretched resources were or how tired/overworked I may have been.
My appointment has now been changed back to the original consultant on 23rd November; though it is unlikely I will actually see him due to the ‘generic nature’ of the referral according to the booking clerk.
Sigh… Limboland is exhausting. If you’ve read this far, thanks and I hope you are having a good day x
P.S. Being miserable really isn’t in my nature. I want to be positive. Think I’m just overwhelmed at the moment