Hey Brit, I'm sorry you are frustrated but look at it like this. You are in great company! Ok first I'm just gonna throw my thoughts out at ya and you can take it or leave it. In my humble opinion you should be seeing a rheumy not a pcp. you shouldn't have to tell the dr. what needs to be done all thought there is not a thing wrong with being aggressive about
your health care. Also weather it be Lupus or somthing else it sounds like you still have some time of auto immune disease. Which is totally normal in as much as there are so many of them that can cause so many of the same symptoms as lupus. You really need to see a rheumy. I can not inficize this enough. Also a second opinion is always good. You didn't mention what your pcp said about
the test. Also there are many tests for lupus and there is not a single one by itself that can rule in or rule it out. So yes even with the neg strans you could still have lupus, or scleraderma, or connective tissue, or pbc, or anything. That is why it is so hard to figure out. I have been trying for over 2 year years and I have a big fat goose egg for a dx so far.
you know a lot of times lupies and others can't always get things like iron supplements to break down in the blood stream. you may need shots. or some other alternative. Your anemia could be from the bleeding in your urine or even the C word causes anemia, also a vitamin difficiancy. Don'
t worry about
the C word it's just a word and probably not anything to do with it. I hope the doctor is treating you for your infection or if you have fatique. most dr's will put you on plaquanil or prednazone in small doses. pain meds if nessessary. I hope your dr. is at least doing that much for you.
My suggestion is you could be waiting for years to get the right diagnosis. I have been diagnosed and undiagnosed and had 3 different rheumy's tell me 3 different things. Just take a deep breath and look at all you have to be thankful for. You have children and a hubby and it's christmas! Don't let this disease take away your joy. If you get tired rest, don't push yourself. that just makes flares worst and last longer. So does stress. When ever you can designate jobs don't be afraid to ask for help. At this point you may have people questioning if you are realy sick or not taking things serious. But that's ok. It's normal. It will take awhile but sooner or later they will except it.
Try to have a wonderful christmas with peace joy and love
I'm praying for ya
Possible scleroderma. stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix,inderal,pot.chlor.,B12
By his Stripes we were healed.