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Tactical Ninja - You know how it's never lupus?

Jul. 11th, 2014

08:49 am - You know how it's never lupus?

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Well, apparently it might be.

Last night my doctor called. When they call you instead of texting, it's kind of a headsup that things are not going to be straightforward, right? So I was braced for what she told me, which is apparently that both my antinuclear antibody and rheumatoid factor (antibodies for rheumatoid arthritis) are positive, and that she's going to refer me to a rheumatologist.


Well, not a lot really. Fact is, RA tests often read false positive and there's a high chance that means nothing, especially since I don't have any of the usual symptoms of RA. I have good flexibility, no swelling in the fingers/toes/extremity joints, and am generally in good health. So in my head I'm flagging that one as a false positive and carrying on.

The other one could mean anything. The doctor did not give me details of the results, which realistically would have gone over my head anyway. I know that if you get a positive ANA, they keep testing at lower and lower concentrations (more or less) until it tests negative. The level at which it does this shows how concentrated the antibodies are in your blood. Or something like that. So anyway, she didn't tell me the details of that but she did keep saying that the test was consistent with lupus and that I'd need to see a rheumatologist.

Now I know quite well that there are loads of things that can give you a positive ANA test. I also know that I have pompholyx, which is autoimmune-associated and could confound the test. I've recently become aware that my weird fingernails, which I thought were a result of the pompholyx, are actually also a sign of hypothyroidism, which is often caused by - you guessed it - autoimmune problems.

The reason the doctor keeps saying Lupus is because I have a family history of it. But realistically, I don't have a lot of the usual symptoms. I currently have a weird symmetrical (as in, on the same place both sides) circular rash that appeared for no reason, and there's the back thing, but other than that I'm just not very lupus-y. If I were to list the things that I'd like to find out more about, it's:

- pompholyx
- why my back hurts (and how to fix it)
- where these weird rashes are coming from
- my general malaise
- increasing difficulty maintaining my usual weight
- feeling cold all the time
- beaded fingernails

I'm not a fan of plugging symptoms into the internet and letting it tell me I have everything from ebola to acne, but there are some things that are consistent with that list, and RA, lupus and hypothyroidism are all on it. Along with a whole lot of other less serious things. Also, I'm very aware that some of these things can also be signs of getting older. My struggle to motivate myself at work for the last couple of years could be put down to external factors - that's what I've been doing along with berating myself for finding it so hard - but as it turns out, it could also be related to all this other stuff. The jury's out on how much of this is attributable to health related stuff and how much is mental.

Thus, I think it's sensible to go see this specialist and let them pincushion me for a while, to see if we can get to the bottom of it.

The likelihood of lupus is low, but it's still there. I'd like to rule it out, y'know?


Meanwhile, I'll keep taking the voltaren because I'm liking being able to sleep through till 5am, and being able to put my undies on without lying on the floor. The doc also advised to keep up the visits with OsteoDude on the off chance that the back thing is just coincidental. Basically she said if it helps, keep doing it. It's too early to tell right now but in a couple of weeks I'll try another day without voltaren and see what happens, and then I'll know. And since none of this stuff is slowing me down much, until I see this specialist and get a proper diagnosis, it's business as usual.

In other news, I dreamed last night that I was in DA: Inquisition. I was controlling an army against the Orlesian invasion of Ferelden, and I had a dragon. I was basically having orgasms over how beautifully rendered the dragon was, and confused about how the Fereldans had discovered oil and were powering ships that looked like the Titanic, along with generators that ran lighting. Anyway, I sent my dragon off to deal with the Orlesians, and then we had nothing to do so we sat around in Varric's house and laughed about the silly things that are written on tampon packets.

I really hope the game is not actually like that. Apart from the dragons.

Comments:

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From:fbhjr
Date:July 10th, 2014 10:03 pm (UTC)
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Whatever it turns out to be, I hope they are able to do something for you!
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From:tatjna
Date:July 10th, 2014 10:05 pm (UTC)
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Heh, thanks!

It all feels a bit bizarre to be honest. In the middle of all this I'm still able to do circus, and carry on with my life as normal. So I'm kind of figuring that even if it does turn out to be lupus, if this is all it's got to throw at me then I'm pretty damn lucky.
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From:meri_sielu
Date:July 10th, 2014 11:45 pm (UTC)
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I hope they get to the bottom of it soon and it really isn't lupus!
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From:tatjna
Date:July 11th, 2014 12:28 am (UTC)
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Totally off topic but your icon is cracking me up.
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From:meri_sielu
Date:July 11th, 2014 01:31 pm (UTC)
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Hahaha Yes, Marco is the best! XD It's one of the few I've kept around for years because I love it so much x
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From:raincitygirl
Date:July 11th, 2014 02:13 am (UTC)
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Well, SHIT. I really hope it's not lupus. Thinking healthy thoughts in the general direction of NZ.
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From:tatjna
Date:July 11th, 2014 02:13 am (UTC)
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New Zealand in general thanks you! ;-)
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From:pundigrion
Date:July 11th, 2014 02:37 am (UTC)
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1. Here's hoping not lupis! Or RA for that matter. Thyroid seems the most managable of those three.

2. Kiwi tampon packets say funny things on them?! In the US that is strictly a Popsicle stick thing.
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From:tatjna
Date:July 11th, 2014 02:47 am (UTC)
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1. I too am hoping for thyroid out of those three.
2. I don't think they do - I've used a cup for years so I don't really know. But we were having a laugh the other day (that may end up being a blog post) about 'ladies fishing rods' and some of the things said in the marketing for them. My brain is weird.
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From:pundigrion
Date:July 11th, 2014 08:54 pm (UTC)
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I use a cup as well, so maybe they have gotten better. All the ads I recall involve women wearing white and running through fields of green grass or doing yoga or eating yogourt.
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From:tatjna
Date:July 11th, 2014 10:32 pm (UTC)
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And for some reason their blood is always light blue.
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From:pundigrion
Date:July 12th, 2014 12:53 am (UTC)
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Oh yes! All tampon/pad tv women bleed Windex.
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From:richaarde
Date:July 11th, 2014 02:46 am (UTC)
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Curious, since I was diagnosed with a possible thyroid deficiency (they retest in October, and if I test positive again I get thyroid meds), what kind of rashes are you having? I have been getting rashes that randomly appear, and then five minutes later they're gone. Sort of a big red splotch, about the size of the palm of my hand, don't hurt or itch.

I've been getting odd pains in my joints (especially my knees, but it's been all over), and an odd tight sensation in my back that comes and goes. My legs feel tired and achy a lot, and I've been feeling lethargic. I feel like I have been gaining weight. An odd hoarseness in my voice comes and goes. Does any of this sound familiar?
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From:tatjna
Date:July 11th, 2014 02:50 am (UTC)
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It's really hard to say - from what I've read, the symptoms are many and varied but a lot of what you've written sounds like the common symptoms for hypothyroidism.

My current rash is circular splotches, mostly about the size of a 10c piece but one bigger, about 6 on one leg and 4 on the other, red ring around, look for all the world like ringworm but don't itch or weep. It's been there for 5 days that I'm aware of but could have been longer.

I'm told that if sunlight makes it worse it means something but hey, middle of winter here and on my thighs, so those babies ain't getting no sunlight!
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From:richaarde
Date:July 11th, 2014 05:41 pm (UTC)
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Yeah, that doesn't sound like the rashes I've been having. (Mine may not even be related to the thyroid thing)

Hopefully you'll get it figured out soon enough. Good luck.
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From:meathiel
Date:July 11th, 2014 07:18 am (UTC)
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Fingers crossed it's not lupus but something less severe ...
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From:jaelle_n_gilla
Date:July 11th, 2014 08:56 am (UTC)
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Oh poor you *hugs* I hate this "we don't know what it is but there will be more tests" thing. I especially hate "we'll only treat after we know what it is". I have mostly doctors now who luckily think the other way around. "We'll treat while we keep testing and if it goes away we'll just call ourselves lucky."

For what it's worth: I test sky-high positive on one RA factor without having any RA. I know where it comes from and it can't be helped, but a rheumatologist would ring all the alarms on me.

Also only for your peace of mind: Lupus, as you likely know, is a complicated mix of symptoms and very hard to test for sure. I think I heard that you can meanwhile test the genetics of it? If that's a sure test that would give you peace of mind, maybe it's worth paying for it. Check with your doc maybe if that's an option (I'm not entirely sure it's a medical test yet or still in research...)

I hope you get answers and treatment soon! *hugs*
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From:tatjna
Date:July 11th, 2014 09:03 am (UTC)
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23andMe has me as a reduced chance of SLE. I can't remember the exact figure, but according to my gene map, it's less than the normal population. But that whole palaver works in % chances so it's not an exact science, apparently.

My money's on hypothyroidism brought on by autoimmune stuff. Luckily that's pretty treatable, and something that can be easily tested for as soon as I see the rheumatologist. I'm willing to wait because it won't be long, and it's free that way. ;-)

I certainly don't *feel* seriously ill.
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From:jaelle_n_gilla
Date:July 11th, 2014 10:25 am (UTC)
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I keep my fingers crossed that it is "just" hypothyroidism. J and I both have it. Him because of autoimmune, be because... well, getting older I guess. We both take our pill in the morning and are just fine with it.

Your TSH level should tell them if you have that. Afaik that should not be influenced by any other antigen or antibody in the blood. Mine is at 1 with medication. Anything higher than 2 is usually treated here (handle with care - measurement units often differ between countries).
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From:russiandolls
Date:July 12th, 2014 06:33 am (UTC)
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TSH is measured in NZ in mIU/L and the normal range is 0.4­-3.8. I'm sure this information is completely useless to you!

Edited at 2014-07-12 06:33 am (UTC)
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From:jaelle_n_gilla
Date:July 12th, 2014 08:18 pm (UTC)
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Actually, no, it isn't :-) Thank you. Seems to be the same units as here with roughly the same range. Depending on indication and gender they treat it earlier or later I guess.
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From:goddessofchaos
Date:July 11th, 2014 02:32 pm (UTC)
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Well, it's good they're checking it all out. And I guess sometimes it is lupus... Hopefully it isn't, but it's always better to know so you can get the right treatment.
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From:kehleyr
Date:July 11th, 2014 09:47 pm (UTC)
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Good thoughts are sent that it's something easily fixable <3
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From:ms_hecubus
Date:July 12th, 2014 01:18 am (UTC)
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*fingers crossed*
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From:brynhilda
Date:July 12th, 2014 07:46 pm (UTC)
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A former workmate of mine sufferd from Lupus, but luckily her symptoms were very mild and she hardly ever complained.

Anyway I hope in your case it's neither of the three!!
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