Hello all!
I've been suffering for 30 or so years with many symptoms.
Since puberty I have suffered with absent seizures, hand shakes, joint pain so bad I can't walk, stiff hands in the mornings (my little fingers get locked and need to be manipulated), stuttering (when I'm not feeling good), rashes on my hands, photo sensitivity, a mild upside down triangle of redness on my cheeks, gastro problems (mainly stabbing pain in the gallbladder/pancreas areas), extreme fatigue, nausea, stomach acid problems, chest pain, laboured breathing and much more.
Also, from puberty, I suffered with really bad gynae issues. Later in life I was diagnosed with adenomyosis (sister of endometriosis), PCOS, PMDD and insulin resistance (from the PCOS). I have since had a hysterectomy and oophorectomy. But since trialing HRT multiple times, I've reacted terribly and had major flareups which can last for weeks.
On the note of flare ups, they can be 2 days or 6 months.
I've had EEGs, ECGs, a brain MRI (which showed some white spotting, which they said was from my seizures, but said it wasn't epilepsy), and 24 hour heart monitor. All of these results came back clear and was essentially told it was in my head and that the next time I feel bad to 'breath in to a brown paper bag'. Gastro told me that they couldn't find anything and to take meds for IBS (it wasn't IBS). I know without a doubt something is wrong.
Test for arthritis, diabetes and thyroid issues have always come back negative.
My mum has 4 autoimmune diseases (not lupus) and when I had my DNA analysed it showed an increased risk of lupus, as well as MS and coeliac disease (although I know that carrying a risk and actually having it are two different things).
I did the bloods of coeliac this week, and in two weeks I'll be getting bloods to test for AMA (getting a blood appointment is very slow where I am).
So this is where I am right now. It would be good to know if anyone else here has symptoms/experience similar to me? I'm scared that again they'll say I'm ok and send me away.
Many thank, Claire