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Discussion Starter · #1 ·
Hello Everyone,
For those of you who have had spinal taps, I am wondering what if any antibodies showed in your CSF. I have a "pretty solid" SLE diagnosis from a few lupus "experts" in Boston, but no one can explain the ANA in my spinal fluid or if it's the cause of my CNS symptoms. My neurologist doesn't seem to know what it means either. Any info would be most appreciated.
Thanks,

Karen:)
 

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Hi karen,

I've never heard of ANA in spinal tap results? They dont test for ANA in spinal fluid as far as I know.

love
Lily
 

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Discussion Starter · #3 ·
Hi Lily,
I know that it's not routinely done, but my neuro did it and now cannot tell me the significance of it--except that it shouldn't be there.
How did your CNS vasculitis become diagnosed if you don't mind answering?
Thanks for your input,
Karen
 

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Hi Karen,

I had a lot of investigations for the CNSV. In the end it was an MRA that showed it specifically. There's a characteristic look to the blood vessels and along with that and the ongoing specific symptoms, neurological clinical signs I'd been having, the MRA clinched it. Prior MRI/MRA's had shown infarcts and lesions on my brain, but nothing as clear cut as what they saw on the last one.

My spinal tap interestingly enough was negative for any findings at the time I had it done. That was about a year or more prior to getting a firm diagnosis on the CNSV. The neurologist didnt bother running another spinal. I believe in the States they have some anti-neuronal antibodies they can test for in spinal fluid too. Its not done here as far as I know. My spinal was mainly done to rule out MS and also bacterial/fungal brain infection as a cause for my symptoms.

love
Lily
 

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I hope Karen sees this, it would be interesting to hear how things panned out for her.

Thanks Clare, that makes perfect sense :)

When I go to the link it says I have either reached the end of the page or I have done my quota of looking (or words to that effect) ;) but I will go google and see if I can get it that way :bigsmile:

love
Lily
 

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Discussion Starter · #7 ·
Hi Lily,
I cannot get the link to open up either. Thanks for remembering me and wondering how I was doing.

My lupus diagnosis is still in question.
I just got back from NIH and they acknowledge the ANA in spinal fluid but for the first time ever my ANA in regular blood is negative but my CRP is high for the first time. I'm devastated to still not have an answer. It was a long and painful trip and I had a blood infection before I left coupled with cataract surgery. I hate complaining but I can't take another summer in the hospital and my vision is just terrible now. The CNS stuff needs treatment and while we wait for more tests to get back to NIH it's going to be just more steroids offered here at home and I can't take that. They ruined my eyes and did little for the pain or weakness. And i now crash when they wear off. I need an immunosuppressant and not just a week or two. They remarked on my illness and anger in the conference call with my dr. I wonder if they got two hours of sleep a night and had to endure painful tests and repeat(start from the beginning) the same details what their mood would be. Probably flat. LOL. Such a stupid medical term. They were good doctors but this isn't an easy diagnosis for new drs they need to see you flare. I'm tired and cranky so forgive me. Anyone go to Mayo and have a good result? I know God is here somewhere.
 

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I've had the "flat affect" comment written about me too. That was also when I was sick as a dog for months, with a young baby, getting 1-2 hours of sleep at night every night due to a combination of pain, severe coughing spells and terrible dry scratchy throat which would NOT let me sleep, etc. All the while continuing to struggle to work. It is so frustrating to have that written about you isn't it?

As for Mayo, I imagine it would be pretty similar to what you're experiencing now with lots of additional testing and retelling your story. My dad goes there and is quite happy with his doctor all in all. They are quite willing to prescribe the next level of treatment if you need it, which it sounds like you do. Why are your current doctors unwilling to do any more than prednisone?
 

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Discussion Starter · #9 ·
Hi Maia,
U get it perfectly. Yes I have seen flat affect written about everyone in the hospital, it's just a lazy description. If my marketing background wasn't there maybe it wouldn't bug me so much, my articles could never get past my boss with the same phrase over and over. I don't know that they won't do more that solumedrol, can't tolerate predisone orally, but it seems like we will just do what we always do steroids. Which cause more trouble now even at low dosages. I spent last summer in the hospital after doing 40 daily. And the big burst just cause a crash. Plus I had a huge buffalo hump that came literally overnight and pressed on my spine which just meant more pain meds. I am surprised the drs at Mayo prescribe meds, does you father live near there. All I can get it seems from NIH are recommendations they cannot prescribe meds or I need to be in another program there to get an rx. Didn't know that before I went. It was an impressive facility with wonderful doctors and nurses for the most part but I don't live there and my fears were exactly the problems that we left with.

For example, I was concerned that they wouldn't have time to see this illness in action and feel like that was true. I can't take another 12 hour ambulance ride when I flare up or for them to see me each week and see the pattern. All they see is that I am angry and somewhat sick or that's how it feels and I am biased based on past experience most of us have heard the "are u really sick too much"
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That's what's so funny when I was in assisted living I had 10 nurses, 2 PT ask for my email/phone and same with the ambulance drivers just to keep in touch. How's that for a flat affect. When I am not sleep deprived or being told "I didn't read your chart so can you start from the beginning" which is 6 years ago, not sure how I am supposed to not be angry. I have had other psychiatrists who were to evaluate me say You must want to just ring someones neck at this point. And that if I weren't able to express my anger I could get depressed so they were happy that I could still do that. It isn't conducive to great relationships but I don't need friends who are drs I need help. Read my chart and talk to me as a human not just someone you need to check off your list and i will be respectful, ask me what you should already know and yes it makes me angry.
When I was described as lovely and pleasant for 3 years but ill they did even less.

Asking me to repeat the same story when they are healthy with perfect eyesight and I am the one to do the work is too much after the 4th or 5th dr does it. In assisted living they got to know things since I was there for more than an month. Even the CNA's asked if my face got really red malary before I got sick! My home nurse who see's me twice a week said my feet were so swollen when I got home, in Maryland they were regarded as a occasionally a little puffy. It's not their fault, but they don't know how I look or act normally so how could they evaluate things. All of my favorite drs at home started with being sure I didn't have lupus or explained away blood tests or wasn't swollen and over time became the big supporters and would argue with other drs who thought otherwise. I'm really tired of running around and my husband and I can't take much more of this. We don't have the energy, money or time. I don't want to move b/c the stress will prob be the last straw but we don't have a choice so now there's more of a burden with us moving in a few weeks. Any advice would be appreciated. I don't know what to make of the spinal fluid ANA or why after 6 years my blood ANA is negative. Unless the blood infection did something to hide it. Thanks for your help, Karen:)
 

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His diagnosis is evolving; initially it was polymyalgia rheumetica and now it is inflammatory arthritis. It sounds much like I experience though but no lupus specific symptoms and no positive autoimmune specific bloods. But he has visible swelling in his joints, joint stiffness and pain, and intense fatigue. They just put him on methotrexate pills and are trying to get him off the prednisone but they bumped him up to 20 after his symptoms exploded with the reduction to 5mg a day.

He lives practically next to the Mayo Clinic in Minnesota. So that is why he goes there; not that his case was so bad or a frustrating lack of care with other doctors. ;)

Good luck to you; I've never heard of anyone else going to the NIH before to see their doctors.
 

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Discussion Starter · #12 ·
So is your diagnosis definite? And based on what? That seems to be the key to diagnosis and treatment. Hope you don't mind the questions. This board isn't public which is why sharing on here doesn't feel so invasive at least for me. Hope you are feeling well and getting treated.
 

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A neurologist specifically tested for ANA in my spinal fluid (along with other things) because I had what appeared to be CNS lupus but was getting back all negative ANAs through bloodwork. This is in fact how I was able to finally get my diagnosis and begin treatment (my ANA was "very highly positive" in the spinal tap).

Apparently, it's easier to pick up ANA antibodies in spinal fluid (at least with CNS involvement, dunno about in general) than via blood. Same thing holds true with anti-neuronal antibodies.
 

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Well, it seems as if people's diagnoses can and do change, but mine has been definite for 6+years now and hasn't changed. Mine is based on meeting several of the lupus criteria and positive blood work. See this link:

http://www.uklupus.co.uk/dxlupus.html

This is a public site - anyone can see this information including those who don't register as a member.
 

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Dear Karen,
My Bloods were negative for a long time eventually becoming positive a few years ago. I have had protein present in my spinal fluid during a severe CNS flare. I do know a girl in the UK who is negative on bloods but positive on spinal fluid but I can't claim to know much about it.
I will say though that negative bloods in no way make you less ill-I felt terrible with them.
x lola
 

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Discussion Starter · #16 ·
Lola,
What is so confusing is my ANA has always been high until recently.
I had IM shots of toredal for almost two months so maybe that worked on the inflammation, not sure. And it was in the 2560 range at some points so it wasn't slight positive it was positive at many different labs, feel good or bad.
 
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