I have read others accounts of having seronegative Lupus so it must exist.
My diagnosis on paper is - ? Seronegative connective tissue disease ?
After a year of being practically house bound I have managed to get to see a rhuemy. It has not been easy.
I am now on 2 x 200 planquinel and 7.5 mg of pred, it has helped a lot but I seem to be in one long flare - which then peaks and can take weeks to recover from. I'm not sure if this is just the way it is with me or there's something else going on. I too have a long complicated history.
At the start of this episode I went down with a flu like virus - the same as the rest of my family, only they recovered and I had mine for over a month and felt lousy - after that I started getting stabbing pains in my knuckle and watched a lump come up on my PIP joint, then the backs of both knees swelled up and I was told I had bi-lateral bakers cysts, they ruptured before the scan and I had fluid trickling down into my calfs for 3/4 weeks (which i had twice in 1st year) I lost the peripheral vision in both eyes for about 8 months just had large white floaters, my feet kept going horrible shade of purple on top of having livedo reticulars and sicca symptoms. I also had sharp pain in my toe joints and felt like I couldn't put my feet on the floor properly as it felt like walking on pebbles, my elbows sting and get stabbing pains and when all this is combined with the feeling that my neck is swollen I know I'm in for a rough ride! It affects my speech which changes in pitch and tone and I get right sided facial ptosis with a numb right top jaw, cognitive disfunction and fatigue are awful.
I had thought this may be RA as joint pain is bilateral along with bilateral Bakers cysts but despite the pain there is only mild synovitis - I don't swell up like RA. All bloods r negative except slightly low vit D!
I have a long history - diagnosed with ME when I was 19 took years to feel well then started to have regular seizures didn't loose consciousness with them - could hear and see but not talk - had inconclusive EEG as had a fit on the bed when they put strobe light in my face.
Got sent to neurologist who diagnosed as psychosomatic!
Have been seeing and osteopath for 6 years as I had symphysis pubic dysfunction with my youngest daughter, then sprained my spine because of it and discovered I had scoliosis - I had complained about back pain for years and begged for help the scan only showed a buldging disc and some cervical spondylossis - I was told I was quite young to have it but it was probably not the cause of my pain and that my pain centre was highly sensitive and was getting jammed on - they put me on amyltriptalene - not for long it was awful stuff, I couldn't function on it! I have a history of 4 miscarriages and bled at 4 months with my middle daughter. My first miscarriage I hemmoridged and lost half my blood and nearly died.
Anyway, so here I am still, 21 years later only this has changed and it sucks, with all the best will in the world I cannot plan anything anymore, despite being a positive person and a mum of 3 beautiful girls. I had hoped the meds would really help and they have mostly, they have reduced my pain, fatigue is helped with the planquenil but my 41 year old body feels a lot older than its years and my mind is stubborn and fighting - but I cannot find a balance yet. A lot of us have families - mine is the centre of my world, just keeping up with there school commitments and staying on top of the home has sent me into a rapid decline for 4 weeks!!
Anyway, enough of the long moan. If there is anyone out there who has similar story is maybe a seronegative case or can look at this and say yep that's similar to me, I would greatly appreciated your input. I do believe my spinal problems are connected or is affected because of whats wrong and believe they are trying to get the right balance of meds for me!
It's a real tricky one because no 1 can really understand unless you are in the same boat.
I wish you all love and light. Xxx