I finally decided to sign into this site, even though I am still undiagnosed. I have had a multitude of symptoms intermittently over the years which have increased to the point where now I am quite disabled.
I have had blood tests for lupus several times over the last 20 years, and the only thing that has been vaguely positive has been anti-cardiolipin antibodies. I have what every doctor when they first see me says is a classic lupus butterfly rash, and then says it isn't when the blood tests come back.
I have a family history of autoimmune disorders, and had coeliac disease diagnosed about 10 years ago (after probably 20 years of symptoms that should have had it diagnosed much earlier!).
Currently I am awaiting a second opinion from a neurologist, as I have significant neurological problems (muscle spasticity, nerve pains, etc) and am taking a fairly high dose of baclofen to control muscle spasm. My first investigations included MRI and LP and nothing showed up on those. I also have a neurogenic bladder and have to self catheterise, but have had no explanation as to what has caused this.
I did see a rheumatologist last year, but although he admitted I could still have lupus even with the negative tests, he wasn't a lupus specialist, and there don't seem to be any lupus specialists or clinics in our area. Our NHS also will not refer to St Thomas's.
I am now experiencing some problems which could be early kidney damage (increased blood pressure and proteinuria) and so lupus is back to being a possibility again. But, I've been in limboland for so long that I don't have any big hopes about getting a diagnosis anytime soon.
Oh, I have also been investigated for systemic amyloidosis, as a skin biopsy (to check for lupus) came back showing amyloid. Again, the investigations were done by doctors who admitted they didn't know anything about amyloidosis, but I was told they were all negative.
So, I guess I'll just hang about on this and the MS society message boards and pick up any hints and tips I can about coping with ongoing disability.
I have had blood tests for lupus several times over the last 20 years, and the only thing that has been vaguely positive has been anti-cardiolipin antibodies. I have what every doctor when they first see me says is a classic lupus butterfly rash, and then says it isn't when the blood tests come back.
I have a family history of autoimmune disorders, and had coeliac disease diagnosed about 10 years ago (after probably 20 years of symptoms that should have had it diagnosed much earlier!).
Currently I am awaiting a second opinion from a neurologist, as I have significant neurological problems (muscle spasticity, nerve pains, etc) and am taking a fairly high dose of baclofen to control muscle spasm. My first investigations included MRI and LP and nothing showed up on those. I also have a neurogenic bladder and have to self catheterise, but have had no explanation as to what has caused this.
I did see a rheumatologist last year, but although he admitted I could still have lupus even with the negative tests, he wasn't a lupus specialist, and there don't seem to be any lupus specialists or clinics in our area. Our NHS also will not refer to St Thomas's.
I am now experiencing some problems which could be early kidney damage (increased blood pressure and proteinuria) and so lupus is back to being a possibility again. But, I've been in limboland for so long that I don't have any big hopes about getting a diagnosis anytime soon.
Oh, I have also been investigated for systemic amyloidosis, as a skin biopsy (to check for lupus) came back showing amyloid. Again, the investigations were done by doctors who admitted they didn't know anything about amyloidosis, but I was told they were all negative.
So, I guess I'll just hang about on this and the MS society message boards and pick up any hints and tips I can about coping with ongoing disability.
