I have been sick on/ off for 16 years since I had glandular fever with recurring infections and a range of more random neurological issues.Now also have gastro issues and am not absorbing vitamin D or iron. Last year I was diagnosed with specific antibody deficiency, the treatment (in hospital once every three weeks) has really helped with the infections (I’ve had none since starting), but this has only highlighted that the majority of my symptoms are something else. Each period I get sick is now getting longer and more serious. My GP today, after a long review of my medical history, has admitted she thinks it might be MS and I am waiting to see a neurologist (also have appointments with a gastro specialist and physio to deal with other symptoms). After thinking I had a clear diagnosis last year, I’m back in no man’s land. I’m really scared. I work freelance as an educator for lots of organisations and am trying to finish my PhD, I’m so driven and motivated but the sickness and anxiety about diagnosis is in my way. I also generally love fitness, indoor climbing, the gym, jogging and capoeira. With my strength and cognition being affected, I’m getting more and more frustrated. Does anyone have any tips for coping with all of this?
Hi, first off, I think your gp should not have said anything about possible MS!
That’s why we have specialists like neuros!
With your medical history, loading this notion on your head was both tactless and unprofessional.
Try to continue enjoying your busy life and wait for your hospital appointment.?
P’s don’t go googling MS…or is it too late to say that?
I do not know if you will find this useful, but you’ve been ill for quite some time, right?
I’m in no way saying you do have MS, but when I was in your situation, something that helped for me was to remind myself that whatever “it” was had been around for years, and I hadn’t died, and I wasn’t in a wheelchair!
Diagnosis changes only knowledge - it doesn’t change whatever’s the matter with you - which has clearly been going on for years, in you case (and mine, at the time).
And you know what? You have coped! So whatever it turns out to be, there’s every reason to think you will cope in future, too.
Somebody christening it “MS” - or anything else - would NOT mean you’d instantaneously take a turn for the worse. You’d manage about as well as you always have.
Hope that helps,