Last time I posted I mentioned that I’d finally got a neuro appointment after 3 years of getting nowhere with my gp. I had to demand the referral and the gp had put on the letter to the neuro that he hadn’t managed to reassure me, meaning of course that he thought there was nothing wrong with me. So I had doubts over whether I should have demanded an appointment in the first place.
Just want to thank the people on this forum for advice given, because I’ve had two neuro appointments, and she found nerve damage in my left foot. Still don’t know what’s causing my problems, but at least I’m being taken seriously. The test results for antinuclear antibodies has come back way out of range (negative for lupus), and my neuro is arranging an appointment with a specialist for me. Still a doubt for me on the B12 front, as my levels are the very low end of normal, but the neuro didn’t think that was low enough to be the cause of my problems.
Haven’t had an MRI so far, and now I have to wait for the appointment with a specialist, which is likely to be some time coming, so I’m feeling a bit lost at the moment.
Good luck to anyone else still trying to get through the diagnosis rigmarole.
Hi Astro, Don’t get disheartened, you’ve had one great bit of news…you haven’t got Lupus. I have that and you certainly don’t want it. They try to eliminate what it could be. Once you’ve had a MRI scan of neck, head and spine and nerve tests done the picture will become clearer. Keep positive and any time you want to rant, rave or just have a jolly good moan remember we are all hear to listen and give advice if we can. Don’t give up hope. Janet x
thanks for the reply. I have had the nerve conduction tests already, which is how she knew I had nerve damage in the left foot. I was feeling in a bit of a black hole when I posted this, but on Saturday am, I received a copy of the request for an appointment with the specialist. That raised the spirits a bit, because I now feel like things are still moving forward. At the moment the neuro"s classified me with a macrocytic anaemia without B12 deficiency, and polyneuropathy (though this was all in French/medical terms, so I think that’s what she’s said). This doesn’t seem to take into account the symptoms I’m getting on one side head to toe from time to time, but I guess she’s giving precisely what her nerve conduction tests have identified for the mo.
For now, I’m dosing myself with B12 and just waiting for next steps.