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Discussion Starter · #1 ·
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.
 

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Welcome to the site - there are certainly plenty of people who can empathize with you. How frustrating to have so many symptoms/problems and insufficients answers/help. It sounds like you have a variety of symptoms and nothing screaming out from your blood work/biopsies telling the doctors exactly how to treat you.

Are you familiar with anti-phospholipid syndrome (aka Hughes syndrome or "sticky blood")? Certainly must be if you know about the ACL being positive a few times... Have they placed you on any treatment for it - even just low dose aspirin? Sometimes this syndrome can cause symptoms similar to MS, and MS has been mistakenly diagnosed in place of Hughes syndrome.

There are a few other members on the board with the MS vs lupus question coming from their doctors too... hopefully they'll be along soon to say "hi" and give out any specific tips they can.

Take care, and welcome again.
 

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Is there any possible way you could get to London privately? I had negative bloods for a long time and was very ill. I NEEDED TREATMENT LONG BEFORE MY BLOODS SHOWED ANYTHING.
hOPE YOU CAN GET SOMETHING SORTED AND AT LEAST BEING HERE WILL GIVE YOU SOME SUPPORT.
Sorry didn't mean to capitalise that but am so wiped out this evening.
x Lola
 

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Discussion Starter · #4 ·
Hughes syndrome

Yes, I am familiar with this. ANtiphospholipid syndrome was first suggested just before I left another country to come back to the UK (where I was born) to live. I've been back here 7 years now and not one single doctor has mentioned it. I don't even know if they have tested for it again, though I have had multiple blood tests, and have said that it was positive in NZ.
 
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