Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Sorry if this goes on a bit. I did post this on the sjogrens group, but I saw my GP yesterday and she mentioned SLE and that she was referring me urgently to a rheumatologist, I see them on the 23rd jan so that's pretty quick.
18months ago I began having issues with numbness and tingling in my hands, it spread to my feet and then burning patches randomly all over the place. It gradually became more painful, joint pain increasing, then started having dry eyes about 8 months ago, and a dry mouth. I have had lots of mri's blood tests nerve studies all normal apart from raised liver enzymes for last 5 months. My eyes have got much worse in the last month with my eyelids flaky and sore also. I also am having stomach pain daily. My nose is also very dry and I have had sinus pain for the last 6 or 7 months
Looking back I also started having indegestion/ heartburn about 2 years ago.
Also 10 years ago I had a parotid tumour and had a parotidectomy
My neurologist says I have small fibre neuropathy and that he will keep looking for the cause of this as if it is autoimmune it may take time to show in blood tests.
My joint and muscle pain is driving me crazy sooo sore, my feet hurt like mad, my hands and wrists are so sore, I am struggling to do stuff like drying my hair, cutting up food, climbing out of the bath because of the hand/wrist pain.
I can't take NSAIDs as I have the added good luck of having polycystic kidney disease - such fun.
So after over a year in limbo I feel like there might be some answers on the horizon.
Oh and my bloods have all been ok, although I haven't had any done since September, apart from liver - raised and Fbc - White count always lowish-just above the threshold for being too low.
My GP has ordered some inflamatory markers to be done next week before I see the rheumatologist.
Apart form all this I am sooooo tired
So I am just now starting to research both sjogrens and now SLE
As they seem to over lap a bit I guess I will just read up on both.
18months ago I began having issues with numbness and tingling in my hands, it spread to my feet and then burning patches randomly all over the place. It gradually became more painful, joint pain increasing, then started having dry eyes about 8 months ago, and a dry mouth. I have had lots of mri's blood tests nerve studies all normal apart from raised liver enzymes for last 5 months. My eyes have got much worse in the last month with my eyelids flaky and sore also. I also am having stomach pain daily. My nose is also very dry and I have had sinus pain for the last 6 or 7 months
Looking back I also started having indegestion/ heartburn about 2 years ago.
Also 10 years ago I had a parotid tumour and had a parotidectomy
My neurologist says I have small fibre neuropathy and that he will keep looking for the cause of this as if it is autoimmune it may take time to show in blood tests.
My joint and muscle pain is driving me crazy sooo sore, my feet hurt like mad, my hands and wrists are so sore, I am struggling to do stuff like drying my hair, cutting up food, climbing out of the bath because of the hand/wrist pain.
I can't take NSAIDs as I have the added good luck of having polycystic kidney disease - such fun.
So after over a year in limbo I feel like there might be some answers on the horizon.
Oh and my bloods have all been ok, although I haven't had any done since September, apart from liver - raised and Fbc - White count always lowish-just above the threshold for being too low.
My GP has ordered some inflamatory markers to be done next week before I see the rheumatologist.
Apart form all this I am sooooo tired
So I am just now starting to research both sjogrens and now SLE
As they seem to over lap a bit I guess I will just read up on both.
I have been diagnosed as Neuropathy, Fibro, SLE, Sjogrens, Raynauds...and I can't remember the few others.
I hope you find your answers as well as support from this site.
Good luck!
I have had the overall pain and burning feet and hands for almost 30 years, finely got a doctor that tested me for everything, an SLE Lupus was the only test that was positive on three tests. The new tests they have are tiered, so if you get a positive on the ANA, then they take it to the next tier and test for more antibodies and DNA, to get a better idea of what you have. They actually have to ANA tests, they can tell what the likely disease is, by the appearance of the test; homogenous, speckled, etc. this can indicate RA, or connective tissue disease, or a few of the others. The test is "AVISE SLE+ connective tissue 2.0" since I was a cash patient, they took $1,200 off of the price and it was only $90.00.
Hope you get some answers and treatment!