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Old 02-08-2006, 10:06 AM   #1
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can anyone offer advice please

Hi,
Just after some advice please.I am 35 and have had osteo-arthritis for 17 years.It started in my back but has gradually worked it's way through my,hips,neck,shoulders,fingers,toes and knees.I have just seen my specialist and he has mentioned that I have tested positive for anti nuclear factor or sle?(a weak positive).Over the last three years I have had more pain in my toes,fingers and hands etc.The pain at the moment is constant.Some of my symptoms are;all my joints stiffen easily,my hands swell and change colour (red) and the veins bulge,my fingers permanently ache (especially my thumb joints).My hands also go very white and my jewellery falls off.My two big toes ache as well as my neck constantly clicking.My knees ache(All the way down my shins).I also get occassional numbness down my leg and pins and needles in my feet.This happens in my arm and hands too.I know it sounds weird but this numb feeling hurts!My feet are nearly always cold.I have regular blood tests.On the last set my haemoglobin was 3 but my white cells were ok.The previous set was the complete opposite.This is the norm for me it seems.I am registered disabled (for the arthritis etc)but I feel a fraud sometimes,as I look like there's nothing wrong.Do others feel like this?One day I limp, the next I walk fine!!It is maddening not knowing what each day brings.Do I sound as though I have this anti nuclear factor?I am hoping that it goes away.Sorry to witter on.Any advice gratefully received.
Thanks.

Last edited by eden1713; 02-10-2006 at 02:01 AM. Reason: no title

 
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Old 02-10-2006, 02:05 AM   #2
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Re: eden1713

Hi,
Sorry to ask again,but pain is bad this morning.Does it sound like I have lupus or am I just worrying over nothing?Going mad with the not knowing part really.
Thanks

 
Old 02-10-2006, 05:34 AM   #3
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Re: eden1713

Dear eden, Welcome! Sometimes when new posts come in to boards like this, older ones get overlooked as they slip down the list. Sorry about that!

Good places to find some quick info to review: (1) the "sticky posts" at the front of the Board (e.g., on SLE; on antiphospholipid syndrome, a clotting disorder seen in some lupus patients; and the one devoted to test results); and (2) via the "Resources" tab above. Go next to Medline, then to Rheumatology, then to lupus.

On ANA: it's very tricky. It can be positive in lupus, but also in other autoimmunes also (like RA, for instance). Or just because of a passing virus. Or because of a family tendency. So bottom line is that it doesn't prove anything by itself.

Eden, I'm certainly no dr. (to put it mildly). But with your symptoms, I hope your drs. have run ADDITIONAL tests. The tests I'm thinking of are the ones you'll find in the post on test results, mainly blood tests for antibodies & on urine, too. These are more definitive, by far, than ANA. But---another "bummer"---even these tests aren't necessarily 100% indicative of lupus, especially where one of the *milder forms* of lupus exist. (Here I'm thinking of things like "SCLE", for instance.)

On your HANDS changing colors: this makes me think of something circulatory, like Raynaud's, or the maybe even the skin mottling seen in antiphospholipid syndrome. (But again, I'm NOT medically trained.)

On your haemoglobin: I live in the U.S., so I'm not sure if this level is suggestive of anemia. Maybe you could just ask your dr. pointblank if it does?

Last thoughts, for now: The ACR "4 of 11" criteria for lupus apply over your lifetime, meaning they don't have to occur simultaneously. So a really good medical history is desirable. Also, the criteria apply to *systemic* lupus but the "lesser lupus'es" fit inside them, too. (Example of that: I have SCLE and scored a "low 4" at Dx; but my rashes weren't malar, my ANA was negative, and my anti-Ro was positive. I've got a lot of arthritis & was anemic.)

I've probably made a mess of this! It's such a confusing subject. But I hope you do read the stickies & key parts of of the resources, then that you'll post back with more questions. Until later, then... Hang in there! Sincerely, Vee

 
Old 02-10-2006, 07:31 AM   #4
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Re: eden1713

A normal hemoglobin is about 12 to 15 (g/100ml). Are you sure you got that number right? Or could it have been 13? If it's really 3, and on the same scale as the above, you probably wouldn't be able to get out of bed!

 
Old 02-10-2006, 02:14 PM   #5
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Re: eden1713

Hello Veej and diinin!
Thanks for all your help Veej in that very long post!I have read the different "sticky posts" and have also done several searches etc on google.My specialist mentioned that the ana was a weak positive casually,but didn't want to discuss it further.Then he sent a letter to my dr(which I have been allowed to read and it says that I have tested positive for the anti nuclear factor (I had never heard of this until my appt with my specialist- he said it is also called sle and lupus)but the letter never mentioned the word weak.I understand when you say that the result of the blood test isn't conclusive by itself.I haven't seen the blood tests taken by the hospital,would it help if I saw the results?Then I could "compare" and ask for even more advice!lol!With my hands though,I had the test for raynauds about 3 years ago and it came back negative.I am waiting for my appt for nerve conduction tests,as my consultant and dr think that I have carpal tunnel syndrome(again)!Don't know if they do one for hypochondria,perhaps I should ask! Lol!!So I shall read some more and hope for the best!Hope you are well in yourself at this time,good luck and I shall hopefully speak to you again soon.Take care,Eden x
Diinin,
Hello!Yes I am certain that the figure was 3.My dr read it out to me and showed it to me so I could see for myself.In general I am not a worrier about things like this.I have been unwell for nearly 20 years,so this isn't a problem.At least it is a straightforward solution.I shall just take the tablets that they have given me!lol!Is 3 really that low?I only asked if I could possibly be anaemic because I have been feeling permanently tired.Have 3 children though,so no rest for the wicked!!Hope tou are well,speak soon,Eden x

 
Old 02-10-2006, 04:10 PM   #6
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Re: eden1713

Dear Eden,

There are a couple of really good rheumie/authors: Dr. Robert Lahita (US), Dr. Daniel Wallace (US), and Dr. Graham Hughes (UK). In the hardcover I have at home, Dr. Wallace lists 16 (!) antibodies seen in lupus. He says these tests are best performed in specially equipped rheumatology labs, as they are tricky to perform.

Only two autoantibodies are really specific to SLE, meaning, if positive, it's just about a given that you have SLE. These two are anti-ds-DNA and anti-Sm. They are the only "anti's" specifically listed in the "4 of 11" criteria, because of the weight of evidence they add.

Other autoantibodies aren't as specific as the two cited above, meaning they can happen in diseases OTHER THAN lupus, too. But here are some: antihistone, anti-RNP, antiphospholipid, anti-Ro (SSA), anti-La (SSB), antiribisomal P, antierythrocyte, ANCA, antilymphocyte, antiplatelet, antineuronal, rheumatoid factor, immune complexes Ag-Ab.

Re: ANEMIA: I think there are additional tests that are performed, to figure out WHY. Some possible reasons are chronic disease, bleeding, from medications, autoimmune hemolytic anemia, or vitamin deficiency---but there may be even more. I'd think your drs. would be looking into that, given your test results.

So if you can get copies of your lab tests, you should. I should have asked for mine but didn't, because I was soooooooo clueless.

Good luck & check in and post again when you can, OK? Best wishes, Vee

 
Old 02-11-2006, 03:31 AM   #7
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Re: eden1713

Dear Veej,
First thing Monday I am going to ring and ask for my results.I am quite clueless about all this,all these years and I have just gone along with whatever the drs have said.No more,now I shall start asking some questions!!
My specialist isn't too keen on people asking questions,so I am imagining some fun times ahead!Take care,hope you are having a good day.I shall post again soon,
Eden x

 
Old 02-11-2006, 07:55 AM   #8
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Re: eden1713

Dear eden, About your dr. being not very eager (seemingly) to field your questions, I hear you. I got a lot of that, too. They snapped, rolled their eyes, etc.

But part of me can now see why it went down like that. If I were a dr., I wouldn't want to overstress a patient; or create emotional wreckage, dependency, constant calls, etc. I was a "subacute" on a slow trajectory.

But I STILL wonder why I didn't appear COMPETENT & ADULT enough to handle the truth, which clearly was they were watching to see what, if anything, would develop. I only understood after the fact that there are people for whom the "other shoe" will never drop, meaning they don't ever progress to a pt. to which a Dx of lupus (or RA, or MCTD, or UCTD, etc.) can be made.

FYI, I *never* mentioned the Internet, doing any reading, etc. until I hit the pt. that I sensed a Dx right around the corner. And I tried to match my demeanor to that of the drs. As in, You want reasonable? Well, Ha, I'll give you "reasonable". Until I was totally sure in my own mind, that is. Then I dug in and roared. Well, Ha, again: my GP had been waiting, I suspect, to see some "attitude". He just didn't want it directed at HIM.

But it is just awful when we are a little afraid to even request copies of our own labs... You are legally entitled to copies, aren't you, where you live?

Well, I'll sign off for now. Hope to see more updates, etc. from you. Take good care, Eden. Hang in there! Thinking of you, Vee

 
Old 03-09-2006, 05:04 AM   #9
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Re: eden1713

Hi Veej,
Thankyou for replying quickly to my earlier posts and I apologise for my very slow response to yours. I have been very unwell with the pain in my hands and joints and I am still tired a lot of the time.Had nerve conduction tests done recently and they show that I have carpal tunnel syndrome,but only in one hand!lol!How can that be when they both hurt the same?! Haven't told my family about tne lupus yet,so I can't even ask them to type for me.I have tried to get my blood results (phoned for them 4 times so far)but am not having much luck.How are you?Hope you and yours are well.
Sorry this post is more of a whinge than a reply!I will make sure the next one is happier!!By the way I am from the UK,how about yourself?Speak to you soon,take care and be well,
Eden x

 
Old 03-09-2006, 10:35 AM   #10
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Re: eden1713

Dear Eden, I've been wondering how you've been making out. I live north of Manhattan. I'd have guessed you live in the UK, from your use of the word "whinge"---which you were NOT, by the way...

Even getting test results can't always successfully move the process along, I suspect. Why? Because ANA and the specific autoanibodies can wax & wane, and of course symptoms do also. But I still think it's worth trying to get results---and also worth trying to see your dr. when you are "on the rise" symptom-wise. Easier said than done for a lot of us, though... I at least had a shot at that approach because I had annular torso rashes that appeared 3-4 times yearly, and I could recognize the lesions in their neophyte stage.

I think it was the UK's famous Dr. Graham Hughes who said (but I paraphrase) that any dufus can Dx SLE where there's, say, a hugely positive anti-ds-DNA result & a malar rash---meaning the more subtle, lower-level cases can stymie and trick even really knowledgeable practicioners. I hope you can get clarity soon & help for the carpal tunnel, too. Bye for now.
Sincerely, Vee

 
Old 03-16-2006, 09:03 AM   #11
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Re: eden1713

Hi Veej,
Just a few lines today!Have finally got through to the drs secretary!Just waiting now to see what happens next.Pain a lot in finger joints and legs(shins as well)at the moment!!How are you?Hope you are ok.Are we allowed to ask personal questions on here?IE,age, location etc etc?If so, how old are you,how long have you had lupus and if you do not want to answer I won't be offended!!lol!!Just thought it would be nice to know some things about people on here (apart from our illnesses!!lol!I am female and 34.And the wrinkles are beginning to show!!Take care Veej,keep smiling,

Eden x

 
Old 03-16-2006, 12:47 PM   #12
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Re: eden1713

Eden, My wrinkles are (alas) somewhat more advanced, as I am 53. I live north of Manhattan. I was Dx'ed with SCLE in summer 2000. My problems date way, way back, e.g., shin pain goes back to age 13 or 14. Then each few years, something new entered the mix. I really was a good illustration of "subacute", come to think of it, until my mid-30's, when I really started to ramp up.

I know personally only one other woman with the SCLE "subset". Her history & mine are quite similar, but she also has APS (antiphospholipid). The day we frst saw each others' annular arm rashes, we were stunned.

Anyway, I hope you're making progress. Bye for now, Vee

 
Old 03-16-2006, 12:56 PM   #13
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Re: eden1713

Hi ,
Welcome and glad to be able to communicate with you. I had ANA back in 1984. I also found out I had Raynauds which is what it sounds like you have. There are two tests for ANA for lupus. One is what is known in my community as the cheap test the other is called the in depth test. I wish you well and know we are here to support you. My problem is yes, others will say "you don't look sick" and second I am extremely tired all the time as if I need a generator.
Even though I don't look sick I now just go out of the hospital as I have had other medical issues and they still say, BUT you don't look sick. Until someone has walked in your shoes, they don't understand, but I sure do and so do others. Know we are here for you and to support each other. Welcome and hope this helps!!

 
Old 03-17-2006, 02:56 PM   #14
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Re: eden1713

Hi Veej!
In reply to your post,the bit about different things happening every so many years i can relate with.This is what has been happening to me,it's just that it's only now that I am beginning to see that it is all joined to the arthritis and possibly the lupus and not just in my head!Had more bloods taken today(for the anf etc).They took NINE tubes again!I kept looking at my arm waiting for it to suck in!!lol!!Still tired but hoping that they will at least show some improvement in my iron levels.How has your day been?Hope you are having a good day.Are you working,if so anything interesting?If I am being too nosey,feel free to ignore me(my family and friends have learnt to!lol! )Speak to you soon,take care,Eden x

 
Old 03-17-2006, 03:15 PM   #15
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Re: eden1713

Hi Dwallech,
Thanks for the post,it was sad to know that I am not alone when it comes to ignorant people making the wrong assumptions,but nice to know that there are people who understand as well.I see my specialist again in six weeks,but I am not holding my breath for any miracle answers.How are you anyway?Twenty two years is a long time to suffer.I hope you are well at the moment and enjoying the good days.Take care,Speak to you soon,Eden x

 
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