I’ve been reading this forum avidly for the past 10 days - ever since neruologist said, ‘so you have ms, so what’! I have been so shocked and scared and yet as I read your posts I realise that it appears that, so far, I am extremely lucky. I have only very mild symptoms - they have appeared over the last year or so, numb thigh, dentist face, tingling toes and a couple of twinges of L’hermitte’s syndrome. None of these were enough to particularly even bother me and I had no idea that they could indicate ms. I went to the gp who did bloods for diabetes, vitamin B12 etc which were clear. He referred me to the neurologist as apparantly tingling in both feet has to be neurological. I waited 3 months not particularly worried (gp had said he didn’t think it would be serious). And then I get the response above.
Here’s where they lucky sets in. Because the neurologist was so loose with her tongue, because she let the ms words out I’m getting the tests done at this early stage. She has given me the diagnosis and when I went back to the gp he acknowledged that ms was his suspicion and the reason I was referred (even though it is not named in his referral letter). I have had no struggle for diagnosis, even if I have had a massive shock. For that I can see from reading your posts, I am grateful.
I did think I’d share this because it is clear that the gp and neurologist both knew that ms would be the outcome but if she hadn’t slipped up I would have been sent away to wait for further symptoms to appear. Whether this is for some patronising reason of not wanting to worry me or becuase it saves money for the NHS I don’t know. I’m hoping that this will help to inspire you to keep going if you are struggling to get diagnosed. While it may be that they don’t know, in my case they forgot not to tell me. When I called back to speak to the neurologist she said she was sorry she’d scared me, she thought I was mentally stronger!!! GRRRRR. How strong exactly do they think you have to measure before being straight with you?
So, does anyone know, am I likely to stay lucky? Since the diagnosis the minor symptoms I have have all flared up but I don’t have any new ones. Is four/five small flare ups in a year considered good/bad. Will I qualify for drugs if I want them…how many questions can there be!