Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases HLA-B27 negative

Lizzie749, you mentioned something that got my attention. Back when I was diagnosed with seronegative spondyloarthropathy in 1990, my rheumatologist also mention that time would tell what category I would fall into. She noted in her records that I have no pitting in my nails, but I have very deep, long, verticle ridges. She thought that was interesting. I have always wondered about that too, since my nails have been like that as long as I can remember.

After all these years, my spondyloarthropathy still hasn't chosen to go down one specific road. At this point, I've decided that it likes being a diverse and unpredictable traveler.


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Keeps life from getting dull, doesn't it

Recently my nails showed more white irregularly at the tips. In addition, I seem to have developed these horizontal white lines under my nails, which I'm sure weren't there a year ago. I polish my nails regularly so I would know. No pitting though, and thicker nails only on the outer toes (pinkie toes? What do you call them?), which is of no diagnostical value since they take regular hits from shoes, apparently.

Not that bothered about the name of the diagnose, though. The treatment's the same.

I too am a negative, but I was referred to my rheumy by my primary Dr., after I said that my fingers swelled up every night, and had since I was a teen. Luckily my rheumy diagnosed me on my symptoms alone. I think he calls me Seronegative Spondylarthropathy. I just had X-rays of my feet which showed a bone spur on each heel, which he said indicated that there has been inflammation there for some time. Weird, because while I have pain in plenty of other places, I've never had any heel pain. Just goes to show you how sneaky this disease is.

BeckySue, your story about your heels reminds me of my neck issues. The first person to mention anything about it was a chiro I had gone to b/c I was desperate for answers/help and was getting nowhere with my PCP or rhuemy. He was very thorough and did a full set of x-rays before he did anything else. He told me that I had some "straightening" of my C-spine (my neck never hurt at that time) and also noted numerous "spurs" and other issues throughout my spine that he said were unusual for someone my age. Neither my PCP or then rhuemy had really mentioned any of this. He actually tried to treat me for a few weeks but nothing he did helped. Thankfully he was very careful b/c of what he saw on the x-rays and urged me to go back to my PCP and push them to figure out what was going on. About 6-8 months after I first saw him I started getting terrible muscle spasms in my neck and within a couple of months I lost most of my ROM there. My then PCP still wasn't taking things very seriously (I had a long list of other axial symptoms as well as very high SED rate and CRP) and my then rhuemy was apparently a total quack. I had to change PCPs before I got anywhere. It's really terrible that with all of the knowledge out there we have to fight so hard to get a DX. This stuff kicks our butts enough without having to "beg" for proper treatment.

Same here. I had lost more than half my neck ROM on each side, my toes were swelled up, my fingers hurt like hell, my CRP was up the roof but my PCP still blamed "stress". lol...

She said there was nothing wrong with my spine on x-rays so it wasn't any arthritic condition.

At least she finally refered me to a rheumatologist who thank god diagnosed me with AS on the first visit and is actually a very good and involved doctor. Thank God for that.

And even better, Enbrel's Enliven program actually gave me the anti-tnf for free for 6 months until the insurance stuff was ready. And every time there's any sort of delay or problem they make all the calls for me and send me free Enbrel until things are OK again. Frankly I have nothing but praise for their staff.

But my PCP sucks. Thank God I barely ever see her again now. It's been like 2 years... The treatment my rheumy gave me, which is Enbrel + Voltaren when needed gave me a lot of quality of life back. My neck is still stiff on the right side but I gained back some ROM on all other movements, my feet barely hurt anymore, my fingers are OK, etc.

katb how is your neck now?

I am also Hla-b27 negative. I didn't get a Dx until I was in my late 60's. I had one Rheumy say that I had the symptoms of AS, but I couldn't have it because I was Hla-b27 negative, female and old. He said that people with As were Hla-b27 positive, male and in their 20's. My GP and my present Rheumy pay no attention to Hla-b27, but pay a lot of attention to my high SED rate.

Wow avonldy, you have really been through it! I am glad I started this thread. Being new to this message board, this thread has helped me to understand how many others there are out there like me.

I am fortunate that I have not yet had any joints replaced, but I've been having a lot of pain in my right hip for a few months now. It's scary to me. I am so sorry you have had to endure so much without knowing what was wrong for so many years. Isn't it maddening!

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I'm B27 negative as well. Essentially diagnosed within a month of seeing my current rheumatologist after a severe three to four month event. Female, just turned 49 at the time. It took another several months of aggressive steroids to return me to my feet. I've only just stopped prednisolone after 30 months on the stuff.

My case has been reviewed by the head of rheumatology at St Vincent's as well as by an emeritus rheumatologist contracted by my insurance company for professional disability. Annoyingly, they both confirmed the DX.

Good and bad luck wrapped in the same package.

By "horizontal" do you mean from one side of the nail bed to the other? Horizontal ridges can definitely be part of the clinical picture of psoriasis/PsA. Horizontal ridges can also be something called Beau's lines, which can occur after injury or serious illness. A quick search turned up this page which describes white horizontal lines (not ridges) as "Muehrcke's nails" which "are usually seen when blood protein levels are low." (Disclaimer: even though it is "Yahoo voices" it is written by an MD though who knows if it's truly accurate...)

http://voices.yahoo.com/what-causes-white-fingernail-lines-6214686.html?cat=69


Vertical ridges (cuticle to nail tip) are common & benign, and aren't an SpA symptom: http://www.mayoclinic.com/health/nails/AN00591

Good source of general info on various nail abnormalities:
http://www.nlm.nih.gov/medlineplus/ency/article/003247.htm


SpA doesn't need a "path." Knowing it's SpA and treating it as such is sufficient. As Lizzie & others have said, obtaining a more granular diagnosis will have minimal impact on your treatment options (except from an insurance payment perspective, for some.)


Part of the problem is the persistent use of the term "AS" which makes SpA diagnosis even harder for those of us who do not meet the modified NY criteria but still have other signs/symptoms/history that fit the SpA picture and nothing else. My own rheumy never uses terms like spondylitis, spondyloarthropathy, SpA, undiff spondy, etc. He has ONLY referenced AS and so he seems to be quite puzzled over what is wrong with me since I obviously don't have RA and do not meet the AS criteria.

At my annual visit yesterday he even "demoted" my diagnosis code from "unspecified inflammatory spondylopathy" to "back pain." I must admit that I feel insulted by this. It's not that he doesn't believe me - I know that he does. I've seen him for years and my complaints (pain location and level) are very consistent. Plus he doesn't prescribe me any opioids or other drugs that could be abused (I have a pain doc for that) so he knows I'm not a drug seeker. He even let me try 3 different anti-TNFs though he was dubious they'd help (of course, when they didn't, that did not help my cause with him, either.) He also knows I have dutifully gone to PT when he suggested it, and a 4 week steroid taper took away ALL my pain. AND I am going back next week to see him to discuss a plan for trying all the stuff that is left (immunomodulators like 6-MP, Plaquenil, MTX) in the hope that maybe something - or some combination of things - will work for me.

So I know he wants to help me, which makes his stubborn refusal to concede I am afflicted by SpA and nothing else all the more hurtful - and personal.