There were a lot of suspicions in the early days of my diagnostic marathon. The funniest (well most ridiculous) was Pre Menstrual Syndrome :lol: I can laugh about it now, but it was ludicrous at the time considering I had the beginnings of central nervous system problems! It certainly didn't explain any of my other symptoms either.................which I was quick to point out to them
There was a strong suspicion of MS too, and that's a really common one with us.
First I was told I had Chronic Fatigue Syndrome,...
Now we graduated to something called Chronic Pain syndrome, (not for long)
OK, now we move on to "YOU HAVE MULTIPLE SCLEROSIS".....(yeah right) and I lived with that diagnosis for over 3 years yet in denial every minute of those 3 years because I knew the doctors were WRONG!!!
Finally I got the correct diagnosis of Mixed Connective Tissue disease with some Antiphospholipid syndrome to go along with it. Finally things are making sense!!!!!:wink2::wink2::wink2:
When I think back and if I recall correctly, start to finish was about a 8-10 year process with me.* FRUSTRATING.......that is putting it mildly.
I had 3 different diganosis - CFS/ME, Fibro and depression
Now they've changed their minds and thinks that my symptoms could be atrributed to lupus. All my bloodwork except for the ANA and one antibody thing came back clean
I cannot remember when I did not get migraines. Most vivid memory of them is starting when I was 5. Diagnosis? Heck, you take a child to the doctor for that? Nope, no need to, just let it run the course.
Symptoms continued to escalate thru the years, and got "flu" in summer, fevers, rashes,
I have had Stress, depression and virtually everything blamed on the depression and also on my under active thyroid which has been well under control ( thanks to a great NHS consultant ) for over 4 years.
Took me 3 years because like all of you I know my body and knew they were wrong, thankfulyl first visit to a rheumy confirmed this,
What helped with a correct diagnosis for me was blood work that started showing a lot of abnormal antibodies, a positive ANA and one awesome Rheumatologist and PCP that put it all together and really listened when I talked.
mine was 8 years of 'you have raynauds-wear gloves'...chronic anaemia and 3 stone weight loss meant ' keep a food diary...are you sure you are not bulimic/anorexic?' .....eventually a GP (who I now love to bits) listened to my symptoms and saw my low complement levels plus various other things and way hey dx!!
8 years of trying to prove you are ill hasn't helped me learn to pace myself though... i still self doubt too much!!
I had a good experience compared to most.. five months of severe joint pains etc and then an 'event' that put me into hospital and diagnosis by the rheumy that had been seeing me and knew my bloods had an auto immune problem, he already suspected MCTD and the 'event' confirmed it.. had had the rash for years but thought it a rosy glow!! I didn't have a wrong diagnosis, but could have been started on the meds and diagnosed without ending up in hospital.. but there you go, hindsight is a wonderful thing:lol:
I am lucky that it was dealt with reasonably quickly.
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