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#1 marsha

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Posted 26 April 2011 - 07:44 AM

So I have another question which I am sure will not be the last... When I saw the Vascular internist last week she kept saying your numbers are 1:256, that is negative from the little bit of research I have done the websites say that is positive. Does anyone know what these numbers really mean? and.. what is the speckling I hear people talk about and is that part of the same ANA testing? Thanks again for all the support you have given me its incredible how much better I feel knowing there are so many people out there fighting the same fight!!! Love you all :thank-you:
Marsha

#2 docmartenmom

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Posted 26 April 2011 - 08:13 AM

Hi Marsha,

From what I know, titers are the number of dilutions the test takes before there is no trace left of what the test is for. I think 1:180 is borderline positive for titer testing, but I cannot be certain. The ANA pattern testing is to try and narrow down what possible autoimmune disease it is for. For instance, ANA speckled pattern can be indicative of either Scleroderma, SLE, MCTD or Sjogren's. Good luck - Lori

#3 Jeannie McClelland

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Posted 26 April 2011 - 08:22 AM

Hi Marsha,

A titer is a measurement that expresses the concentration or dilution of a substance. So when they are talking about blood tests, it is the number of times a solution can be diluted and the substance can still be detected. The dilution is a serial doubling. Say you took a grain of rice and put it in a cup of water. You'd have 1:1. Next dilution would be 2 cups of water, then 4 cups (not 3), then half a gallon, etc. Now that makes it seem like 1:256 is high, but because of the way the serial doubling works mathematically, it isn't. On the next doubling, the antibodies weren't detectable. (For instance, on one of my ANA tests, they got 1:1320 and both nucleolar and speckled patterns were visible.) Also, the titre can change AND most importantly, is not a reliable indicator of disease activity. If a titre is quite low, it might be regarded as negative, possibly a false positive, and/or just something to recheck later.

ANA stands for anti-nuclear antibodies and 'speckled' is the pattern of fluorescent staining within the nucleus of the cell. It's a visual description. Homogeneous would mean the whole nucleus would be fluorescent. A speckled pattern indicates the antibody is directed at different antigens.

Just to make life interesting for us when trying to figure out what test results mean, the results can vary from lab to lab, from testing method to testing method, and the interpretation by the doctor (when they decide a titre is not significant). Which pattern indicates what is also a subject of some controversy.

All that hoohah about antibodies is one of the reasons that a positive antibody test isn't sufficient for diagnosis of scleroderma - there are clinical signs (symptoms) that have to be present too.

Perfectly confused now? Me too, most of the time. :blink: :lol:
Jeannie McClelland
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#4 marsha

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Posted 26 April 2011 - 08:43 AM

Thanks Jeannie and Lori,

It does explain some stuff, while one Dr. told me it's positive the last one kept saying its only 1:256 which I have to be blunt has totally thrown me off because of the fact that I feel terrible and I can't get in to see my Rheumatologist for another 2 months. I am on day 11 of a terrible headache that I can't seem to get rid of.

Be well and thanks again
Marsha

#5 Joelf

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Posted 26 April 2011 - 08:51 AM

Hi Marsha,

Sorry about your awful headache; constant pain can be very wearing! Is there any chance you could perhaps get an appointment with your rheumatologist a bit sooner by taking a cancellation?

I can't add anything to Jeannie's informative reply and we also have a link for Anti-nuclear antibodies which I hope you'll find interesting (hover over "Rheumatic" to get the different types of autoantibodies.) I found the information fascinating and spent ages studying the different antibody patterns (but then I am a bit sad and probably should get out more!! ;) :lol: )

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#6 Jeannie McClelland

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Posted 26 April 2011 - 10:13 AM

Uhg! An 11-day headache? Nasty! :wacko: I'd go camp on my primary care provider's doorstep if I were you. Could be something other than autoimmune woes~
Jeannie McClelland
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#7 marsha

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Posted 26 April 2011 - 12:02 PM

Got into my primary tomorrow morning first thing, I am on a cancellation list for the rheumatologist, hopefully I will get in to see him in the next couple of weeks; I don't think I can go on much longer like this. I have been checking out all the information I can get about every aspect of this awful disease.. AMAZING stuff out there, well not amazing, but you all know...will let you all know when I know. I can't say thanks enough for all the great info and support!!!

#8 marsha

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Posted 27 April 2011 - 10:14 AM

came back from the Primary a bit ago, they are thinking that it's just a tension headache and gave me some meds to hopefully help. I have another question... I am wondering if the headache is more due to inflammation in my head, the pressure I am feeling is enormous, does Limited Sclero cause inflammation? I just wish I could find some answers I think it would make me feel so much better.
Thanks All
Marsh

#9 Jeannie McClelland

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Posted 27 April 2011 - 10:44 AM

Hi Marsha,

Headache can be associated with scleroderma (see various entries in Scleroderma Brain (Cerebral) Involvement) and it is possible that is going on with you, but considering all the 'excitement' you've been having lately, don't you think that at least part of your headache could be due to stress? Goodness knows, this wretched disease can certainly raise one's stress levels. :glare:

About half the time I don't realize that I'm getting too stressed, but my unfailing clue is pain in my jaw and the front of my face. I'm a jaw clencher when under stress and last year, when I was helping care for a friend dying of cancer, I'd spent so much time with my jaw clenched that I bruised the tooth and its nerve! (I didn't even know this was possible~)

We've got a section on Coping with Scleroderma with some useful tips and a very good section on stress. Different things work for different people, but I use a combination of mindfulness, meditation, and a relaxation technique where you consciously relax each body part. I've gotten so good with the relaxation technique that I use it to help me get to sleep - in the dentist chair, while my husband is driving, watching the nightly news! :lol: Stretching out and listening to a good audio book works pretty well too.

Say "Bye-bye headache!" and feel better soon, OK?
Jeannie McClelland
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#10 Snowbird

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Posted 30 April 2011 - 07:17 PM

Hi Marsha

Sorry, I can't add much more either but I too would certainly consider that tension headache to possibly be stress related if it were mine. Stress is really bad for autoimmune (and doe everything else I might add). It seems whenever I get really stressed/worried, then on come the headaches too. I sure had a lot of them in the beginning when I was constantly trying to come to grips with what this disease could/might do.

I had hot baths for my headaches to help relieve the stress. I didn't have one of those bean bags that you heat in the microwave or I would have used that as well. Let us know how you make out...hopefully, the medication will help soon.
Sending good wishes your way!

#11 kacklebird

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Posted 15 May 2011 - 06:22 PM

Hi Marsha,

If I were you I'd get a copy of your lab results. I'm wondering if your ANA is 1:2560. My first ANA was 1:2560. The numbers double and they typically from what I've always read are reported with these specific numbers..... 1:40, 1:80, 1:160, 1:320, 1:640, 1:1280, 1:2560 and so on. I've never heard of a 1:256. At least I think that's what you had said. I hope you can get an appt to see a rheumatologist soon. The wait feels like forever and ever. I know I felt that way when I was waiting to be seen. They worked me in a little sooner after my primary care physician called, but still was a long wait. I don't know of any rheumatologist that you can get in to see quickly. It's a shame because there's a shortage on rheumatologist doctors. I'm new to the group and haven't posted in a while, but I hope you feel better and can be seen soon. If you're in a lot of pain right now maybe your primary care physician would prescribe something to help you until you see the rheumatologist. Mine helped me out so maybe give your doctor a call.

Take care :VeryHappy:

#12 judyt

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Posted 15 May 2011 - 10:43 PM

Hi Marsha,

As you will see if you read the post I have just entered about how long I have had CREST you will see that a headache was one of the first, and I might add most persistent, symptoms I have had to deal with. There is definitely a vascular compoment to Sclero, as all the medico's keep telling me, and headaches are frequently vascular.

I suffered with headaches at least twice a week from 1966 until 2002 when my general practitioner prescribed Amlodipine to try to lessen the effects of severe Raynauds. This was before I had the diagnosis of CREST and the result was miraculous - no more headaches. Trouble is she (my general practitioner) changed my meds a few weeks ago and now the headaches are back again. The one thing I have found so far after taking 3 doses of headache medication in as many days is that the new drugs are much more effective than before and the after effects seem to be negligible - hooray (I think!!!)

Instead of using a sub-cutaneous 'injection' I have been prescribed a 'wafer' which dissolves instantly on your tongue and so far has no back-lash (fingers crossed). I no longer have to say that I am either getting a headache, got a headache or getting over a headache so that is a plus. I know that headaches can be caused by stress, food, clenching your teeth and a million other causes but these days I don't think you have to put up with them. I think I am one of the most laid-back people I know but still I get headaches and woe betide the person who tells ME it is stress!!!

Good luck to you in your quest to find relief.

Judy T

#13 Shelley Ensz

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Posted 16 May 2011 - 04:13 PM

Hi Marsha,

ANA's can be confusing, can't they? With scleroderma they can sometimes help a bit with diagnosis, but since healthy people can also have positive ANA's, scleroderma is diagnosed based on a constellation of symptoms. As it happens, headaches are not one of the defining symptoms, even though some types of headaches can be caused by some complications of scleroderma. The reality is that millions of people get headaches everyday, even perfectly healthy people. There are also many different types of headaches, and different causes of each. The doctors can tell an awful lot just by our description of the headache and usually relief is in arm's length -- with the right medication.

It is typical of headaches to make it feel like your head is going to explode from the pressure. It is more of an illusion though since obviously heads don't go around exploding. <LOL> I am prone to migraines and sometimes I get regular old-fashioned tension headaches, too. Neither of them are pleasant, to say the least. Once I had a tension headache for 30 days straight, which turned out to be caused by a food allergy. I had taken a sudden affinity to soy cream in my coffee every day. I quit the soy and voila, instant headache relief. In the springtime, especially, a lot of people develop headaches (especially sinus headaches) from allergies, and those can definitely drag on and on, until the offending allergen goes away. Allergy testing can help identify any culprits there. A neurologist diagnosed my migraine-class headaches but I would think most primary care doctors are good at pegging the variety of headache pretty well.

Something worth noting is that although scleroderma complications can be a (very rare) cause of headaches, having a headache is not considered to be any part of a symptom for diagnosis of scleroderma. It is telling symptoms, such as pulmonary fibrosis, pulmonary hypertension, and visible skin tightening which can help lead to a diagnosis. Even then, it is the overall constellation of symptoms that matters (and not the ANA test.)

If you are suffering a very severe headache, keep an eye out for any other symptoms and if necessary go to the E.R. I once had the worst headache of my life, compounded by some incredible fatigue. At work, I would take breaks just to go to the bathroom and cry because I didn't think I would live or stay awake another minute.) But I was too accustomed to being sick by then, so it was only after a number of days that I finally went to the E.R. for it. Turns out, I had severe pneumonia and a very high fever -- but my head hurt so extremely bad that I hadn't even noticed the fever or difficulty breathing.

So, there's bad headaches, terrible headaches, and worst-ever headaches, all of which are on a broad continuum depending on what we are used to. A headache that might be "mild" to one of us might be severe enough for another one of us to go to E.R. and over time, our ranking of headaches might change. But by all means, I've never had a "pleasant" headache and I'm betting you haven't, either. Here's hoping you feel a little better, soon, and an extra hug for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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