Hi all, I have been reading and scouring all the questions to find all the info I can on Lupus.
I have not been right for almost a year now, mainly with tiredness (so sick of saying, I am just tired !) and the most horrific mouth ulcers, i normally have between 10-30 at any given time, and am taking Prednisolone in a staggered dose (40mg on day 1 trailing to 5mg on day 8) having a break waiting for the ulcers to get bad then starting again.
These all started in Oct 2011, I saw a MFU consutant in JAN 2012 because my doc thought I had mouth cancer, he then after 6 months sent me to a oral specialist in London, who diagnosed Alpthous Stomatis (bad ulcers) and put me on azathioprin, as my ANA came back positive in his words for an auto immune disorder.
So I start the Azathioprin in August and basically came out in hives, went back to see a different GP, who took one look at me and said OMG who look awful, gee thanks !!
So we start investigating my last 9 months of bloods.
I had already had tests to rule out Betchets, Chrons, Celiac, B12 deficiency.
The he said oh, your ANA came back positive, 1:320 with a Nuclear pattern, he explained it could be scleroderma and polymyositis or SLE. (he also explained that the prednisolone can make the reading lower, so in fact it may well have been higher)
We have tested for Polymyositis and scleroderma and both are negative, I have now had a Anti dsDNa and am waiting on the results (been waiting 2 weeks! Docs are chasing it today for me),
Basically when we sat and looked I haven't been well for about 4 years since the birth of my 2nd child.
Raynaulds Disease (started in 2008) my finger tipps often just go blue, even in summer
Extreme pain in my toe joints, akin to Gout
Blood Clot during Pregnancy (2008)
Extreme sciatica (i ended up in a wheel chair) during pregnancy 2008
Hip pain during pregnancy 2010
Extreme SPD during pregnancy 2008 and 2010
Back ache, especially in winter (since 2001)
Achy legs (always)
Night Sweats (2012)
Depression (started 2001 but has been more extreme since 08)
Palpitations (although these have calmed down somewhat recently)
Mouth Ulcers ( I have always had them since I was 8, but they have been getting worse and worse in the last 5 years)
Nose Ulcers (last 3 months or so)
Extreme Tiredness (not so that I can't get out of bed but I could easily go back to bed right now and sleep till tomorrow)
The awful hot red rash that comes up on my face and chest, it is like a hot flush, last for an hour and then will go away, it totally wipes me out and I need a 5 min snooze after.
Weight fluctuations, but not sure if it is connected as I have had a mirena fitted and have the Prednisolone "moon face"
On and off iron deficiency aneamia
Permenant Swollen gland since EBV as a teeenager.
Extreme reaction to any virus, my husband gets a cold its gone in a couple of days, I get a cold i have it 2 weeks and then get a chest infection, the slightest sick bug, I will get gastro flu and end up in bed out of it for days. I am also entering Tonsillitis season !
The new doc I saw was great, he said straight off the bat, I am wondering if you have Lupus, something I wondered myself, he arranged the Anti dsDNA and is going to refer me to our leading Rhumie in the area (well I hope if not I will go privately).
I don't seem to have a "flare up" unless the last 9 months has been a continuous flare, I am fed up of being out and having to come home because I am tired, or going to bed with the kids, or saying to the kids, sorry mum's tired, they go off on their bikes with my husband, that would just kill me, so does a day out, I am flagging and need to have a sit down and a rest.
I am sorry to have got this all off my chest, I tried to talk to my mum, who firmly believes illness is in the head, and my husband doesn't want to discuss it till we know what it is and a firm diagnosis, so at the moment I just feel like going ARGHHHHHHHHHHHHHHHHHHHH
I should hopefully hear from docs today, at least to make sure the blood test is being done and they haven't dine anything daft like lose the results (they have done that before)
Is there anything I should ask the doc, 10 mins never seems long enough to discuss anything with him .. or should I just turn round and demand a rhumie referall ?
Incidentally I am back on the Prednisolone as I am having a bad ulcer flare up.
sorry for my rambles !