Hi,im a newbie im hoping anyone can give me some advice as im struggling to get a diagonosis on my condition.I do believe i have lupus although my bloods came back negative.
Ive not heard of it until a few months ago when i was admitted to hospital with a suspected stroke im 39! The neurologist i saw asked if i had been tested for lupus before as he had looked through my long list of notes over the years and he suspected it could be.
10years ago i suffered with swollen glands,i was treated for tonsilitis but it got worse over a month of antibiotics i started swelling on my face ,eyelids first then my throat and lips,i was told it was an allergic reaction as i was breathless too,i was given prednisolene to calm things down ,this took the edge off but i still looked horrendous!
My Dr referred me to an immunologist as id developed a rash also around my neck ,it was sore and had flattened pustules.
The immunologist i saw for 3yrs he put me on Mcycophenalate after trying Aziothioprine as i reacted badly to this! My bloods were always fine, and he hoped it was a blip in my immune system after a bad virus, i felt back to my normal self.
However after i gave birth to my second child 4 yrs ago things have gone from bad to worse healthwise! I dreaded going to the doctors as im sure they think im a hypochondriac!
I had to give up work 18months ago running my own salon as i was struggling with my joints and fatigue,i had shingles 8 times in a yr, my Dr refered me to a rhuematologist,i had mouth ulcers,nose ulcers which had a biopsy on but again nothing showed.
I am considerably worse during menstrual times and have brain fog and memory loss ,i see a podiatrist as i have tendonitis and have carpal tunnel and suffer with the nerves in the right side of my neck,i think this definitley contributed to my funny turn a few months ago.whilst in the hospital speaking to the neurologist briefly he asked if i had chest pain,thinking he meant at the time of the stroke i said no,but i had a few weeks before not central chest pains but on my left handside during the night and i have had them since!
However since being discharged from the stroke ward i saw a new rheumatologist maybe i went with too high hopes of finally getting a proper diagnosis rather than psoriatic arthritis which they had been treating me for with sulphasalazine,and saying my other symptoms werent connected!!
What a disappointment it was!! I was in tears as she brushed it off as the bloods are all fine and im a healthy woman from all the results and i should be pleased!! The suspected stroke was possibly just a serious migraine .
Yes i am happy that the results all look good but im still in hell and awaiting the next flare up to deal with on my own,ive asked my doc to refer me back to the immunologist,im still waiting!
sorry its so long but i would value any feedback ,this thing is affecting my young family also as the tiredness just takes over me and im fighting to stay up so i can at least put my 4 yr old to bed at 7pm most nights so i can go to bed !