Update to my previous post. I went to doctor today and went through some of my symptoms and she looked again through old notes etc and decided that it would be a good idea to refer me to a rheumatologist. Cant get in till February (worse than waiting list for neurologist) but progress still the same. Apparantly I also have decreased kidney function (eGFR 84), but doc wants to leave further testing for specialists. I found a little bit of information about this and what I found suggests Stage 2 Chronic Kidney Disease (early stage). However in the absence of any other "kidney symptoms" whatever they may be I do not know how significant this is in relation to any diagnosis of an autoimmune disease. I do see in the criteria for lupus there can be kidney involvement but I am wondering how extreme this would need to be to be included in the criteria. Now I just wait.
Lorraine, I'm glad you got the referral. I don't know what your kidney filtration result means. The lupus literature usually cites other tests, like BUN and creatinine (blood tests), and urinalysis (to look for casts and blood in urine), and kidney biopsy. In other words, your kidney status might not be knowable, based on that single test...?
You may find that the rheumie runs different tests than those your GP ran. Also that results may be interpreted differently by a specialist. Ditto with all the symptoms that make up your lifetime medical history.
Are you also going to a neurologist? Hang tough & stay in touch, OK? Thinking of you & sending best wishes, Vee
Lorraine, hi again. I should have asked what you meant by GFR: a calculation based on other values, or one of those iodine IV tests? (I was envisioning the IV iodine kind, only because that's one I had, so I may have sent you a stupid & mangled response. If so, sorry!)
The "stickies" contain other helpful resources, if you want to pore over more info before your next appts. Stay in touch, OK. Bye, Vee
Not a silly response I understood what you meant . The GFR is a value based on other values eg creatinine etc in your blood which indicates how well your kidneys are functioning. Mine came back at stage 2. There are 5 stages of kidney function according to the kidney org. My understanding is that in the absence of any other symptoms that it may mean nothing, like all these other tests it seems (these autoimmune diseases appear to be very complicated, lol ) but in the presence of other symptoms it could mean something if you get what I mean. Obviously more tests need to be run but the doctor wants to leave that to the rheumy and yes I have an appointment also with neurologist, One at the end of January and the other first week of February.
I am still leaning towards the tendency that it is lupus/sjogrens rather than MS though, but my doctor still wants me to see the neurologist. I don't mind as I will be getting two opinions rather than just one. Not a bad thing.
Something interesting I found on the net, I came across some pictures of what they call plaques. They were on the hands and knees and it said they could be associated with systemic lupus/sjogrens. Funny I have those. All across my knuckles and the knuckles on my fingers get quite purple looking, scaly, really dry. If I clench my fist, my skin around the knuckles looks really tight, like my knuckles are slightly swollen (they do feel swollen sometimes). I am also losing the pigment on the tops of my hands, and if i get a cut (even a tiny one) it takes ages to heal, goes really purple first then scars funny. I now have little white patches over the tops of my hands. The purpling and scarring on my hands are really obvious in summer time and my hands look terrible, but still noticeable in winter. I also have this happening in smaller patches on my face and around my neck and shoulder area. I had never considered lupus because I associated it with the malar rash, Im just now realising that it can come out in other ways and perhaps ive had the signs all along, just never put them together. The other funny thing ive noticed was that my eyelashes and my eyebrows are losing their colour, of all things. The last few days I have struggled to get out of bed and still feel tired, my hands are playing up and my knees are hurting. The waiting game is not pleasant thats for sure. But I am glad I found this place and grateful that there are people that I can talk to. It helps a lot.
Lorraine, I think it makes such good sense, the way your GP is sending you out somewhat WIDELY, to neurologist & rheumatologist---not narrowing prematurely. I also think that's the mark of a smart & wise doctor: thinking widely, not narrowing his/her thinking prematurely. Grab at it all, is what I'd advise! Let us know what happens next, OK? Wishing you clear answers and better days ahead, Vee