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Old 04-02-2013, 01:25 PM   #1
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Question Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagnosed

I was wondering if anyone shared these symptoms with me who already has a diagnosis...

I began getting very out of breath from just walking slowly. Felt extremely weak to where I couldn't stand up for more than a couple minutes at a time. I also experience shortness of breath at time while doing nothing. I have raynauds causes my hands and feet turn completely purple and numb. I also have both hand swelling and my hands turn bright red, veins bulge, and pulse. They are also extremely hot to touch and feel like burning. There are other times where just my finger joints are red and have hand swelling. I have been getting rashes on my hands as well that itch veryyy much. My hands get very dry and at one point looked very slick and shiny. I have been getting rashes across my arms, chest, and face in addition to my hands. My face gets extremely red across my nose and cheeks and feels tight and warm. I have two circular red patches on the side-back of my scalp under my hair that are dry, but don't itch. Have chronic back and neck pain, and there are times where my knees hurt so badly, and nothing takes it away. I also lost 18 pounds in about 4-5 months. I also experiences diarreah and horrible cramping numerous times a time, along with bloating, nausea, and sometimes vomiting. I started a gluten free diet which relieved these symptoms a lot, but I still experience episodes of nausea. Headaches all the time. I also have fatigue so badly that I cannot function and usually ahve to just sleep, and the most frustrating symptom is the disconnected feeling or "brain fog". There are sometimes where I sit in front of something for minutes at a time just trying to piece together enough thoughts figure out what I was trying to do in the first place. Horrible memory. I will say things twice in a row because I think I just thought it and was getting ready to say it. I tend to forget what I'm saying in the middle of a sentence on a frequent basis. I had a ANA test in Dec. 2012 that was positive at 1:160 and speckled pattern. I also had a Negative RF test. My family doctor thinks something along the lines of Rheumatoid arthritis or lupus. She referred me to a Rheumatologist, and I waiting to get right now, but feeling this way with and waiting is very hard! I was almost relieved that the test was positive, because I thought I was just going crazy. I tried to act normal and didn't talk to anyone about my symptoms before my dr. but my family and friends could tell something wasn't right. The "brain fog" and seeming out-of-it was the biggest give-away. I"d really appreciate anyone's feedback who share's any or some of these symptoms and have a diagnoses

 
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Old 04-20-2013, 04:17 AM   #2
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Hannah, sorry to be slow in posting back (am having a bad month). I had many of the same symptoms and was finally diagnosed with lupus. I'm not sure whether you've seen the rheumatologist yet, but here are a few things I learned the hard way that hopefully will make you wiser sooner than I was.

Rashes on face, arms, chest & hands. There are 11 criteria for diagnosing and classifying systemic lupus (SLE). Only 2 specific rashes, malar and discoid, are criteria, yet there are quite a few OTHER lupus-specific rashes possible. Look for the "sticky posts" (permanent info posts) on the lupus board. They all contain useful info, but you may want to start with the one containing the ACR criteria & the one on skin problems seen in lupus. (My rash was dx'ed as SCLE, the annular = targetlike form.)

GI misery. I had 2+ decades of episodic problems. Invasive tests ruled out the inflammatory bowel diseases (Crohn's, ulcerative colitis) and Celiac. So that left "it's all in your head" and IBS. Interestingly, once I started Plaquenil for lupus & started avoiding sun, my GI problems receded in quick fashion.

Fatigue, brain fog, headaches, weight loss . I had all these. Headaches were show-stoppers, migraine-like. Shin pain was my most common kind (since age 13, actually); also lower back, sciaticia, elbows, and shoulders. My weight see-sawed, due to lack of appetite and my GI problems.

Tests. Once your ANA was positive, were add'l tests run for specific ANA subtypes? FYI, two auto-antibodies are considered VERY specific to lupus: anti-ds-DNA and anti-Sm; but others can be positive, too. (I tested positive for anti-Ro. Anti-Ro may also be positive in Sjogren's and in serum complement deficiency, i.e., it's not specific to a single condition.)

Have you also had your thyroid levels checked? Hypothyroidism can cause many of these same symptoms, inlcuding a positive ANA. BTW, people can have solely hypothyroidism, or can have it in addition to other AI's (like lupus).

Hope this helps a little & that you post more soon, either here or on the lupus board, wherever you prefer. Here's wishing you good luck with your appointment. Let us know how you're doing. Sincerely, Vee

Last edited by VeeJ; 04-20-2013 at 04:21 AM. Reason: typos

 
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Old 04-22-2013, 10:13 AM   #3
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Thank you so much for the reply to my post! It is very helpful to see that someone has experienced very similar symptoms. In the past there has been times when I've wondered if some symptoms were just "in my head". I have not been to a rheumatologist yet. I am currently on a waiting list at a clinic that helps people who are uninsured. The ANA test (positive) was the only test I have had done, besides the RA factor test which was negative. My family physician did say she was pretty sure the rheumatologist would order a bunch of tests to narrow things down. I have had my thyroid levels tested twice. That test was suggested because my mother has an underactive thyroid. Again, I really appreciate the response.
Thank you so much!!
Hannah

 
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Old 04-22-2013, 10:33 AM   #4
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Hannah, Sorry you are feeling so bad, but I assure you, this is not in your head. I have had lupus for 30+ years, and have or had many of the same symptoms you are experiencing. I would let your new rheum know about your Mom's history of hypothyroidism and ask to have anti-thyroid antibodies checked along with the rest of the tests the rheum will want to do. If you have autoimmune thyroiditis along with the lupus possibility, it can be treated and make a big difference in raising your energy level. Since you have had tight, shiny skin on your hands, and a tight feeling in face, I would mention that specifically to the rheum so he/she tests for scleroderma as well, or progressive systemic sclerosis. Sometimes that is just from swelling (the tight shiny skin), especially if it is intermittent rather than constant.
I want to reassure you that once your diagnosis is pinned down and you start treatment, you will surely feel better in time. You may not get to where you were before illness started, but will be better than where you are now. I would do anything you can once you feel better to get some kind of health insurance, as this will be an expensive disease to manage. The brain fog is very common and should respond to treatment as well. I don't know how your post didn't get any responses for so long. I normally look for lupus related posts and somehow missed yours.

 
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Old 04-23-2013, 07:18 AM   #5
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Ladybud,
Thank you so much for the response! These posts have really helped me to realize that all these (seemingly random) symptoms may really be caused by an autoimmune disease. At first I was upset about the positive ANA test results, but I was also very relieved to know somethings going on with my body that is not right. My biggest fear has been the thought of suffering in this state for the rest of my life, but it is definitely comforting to hear you say that treatment will help alleviate some of these horrible symptoms. Thank you for the tips on what I should bring to the rheumatologist's attention once I get in. Thank you so much for your reply to my post. You guys have really given me a lot of hope for the future. You also have encouraged me to trust/validate myself as to the symptoms I'm experiencing. It honestly means more than I can say. Thank you!

 
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Old 04-23-2013, 10:29 AM   #6
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Hannah, another thought is that you might watch to see whether UV light exacerbates your symptoms, both rashes & all other.

Also, local libraries usually have lupus books written for patients. Look for the ones that discuss lupus and its close cousins (RA, scleroderma, etc.), and how each is distinguished from the others. You don't have to memorize to derive value, or read every single chapter and line---just the parts that ring some bells. I understood my new specialist reasonably well (well, better than I had the first umpteen doctors I'd seen) because I'd done some free reading in advance.

Let us know how you're doing, OK? Glad you found us. Bye, Vee

 
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Old 05-02-2013, 11:40 AM   #7
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

VeeJ,
Thank you for your last post. You know, I went out in the sun about a week ago and it didn't even take 10 minutes for my arms, chest, and face get a rash. The next day I felt like a got hit by a bus. My joints and body hurt so bad and I was very groggy. Is that at all common? It seems so weird for me to wrap my head around! lol. This morning I got a phone call to notify me that I have an appt. with a Rheumatologist on May 23rd! This will be my first appointment, and I cannot say how nervous I am about it. I'm very relieved to start the process of figuring out what's going on with me, but I'm also a little scared to hear the answer. I'm going to start reading up about some of the diseases you mentioned above so I can be better prepared. You guys have offered me a lot of great suggestions on what I should mention at this appointment, but if you think of anything else I'd love to hear it! Thank you guys. I really don't have anyone who would understand this, so it's great to be able to talk on here. Thanks again!

 
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Old 05-02-2013, 11:51 AM   #8
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Glad you have an appointment set up Hannah. Your reaction to the sun is a classic symptom of lupus, so you should mention it to Dr. If you get the rash again, take a picture of it wherever it is to show the rheum, since these rashes come and go and may not be present the day you see Dr. I would not take any non- steroidals like ibuprofen or naproxen 48 hrs. before your app't so as not to suppress any inflammatory markers or other lab evidence in case he does more tests. Hopefully he will start you on some treatment this visit or next, if he orders more tests and wants to wait on results first. I hope he is straightforward with you, not wishy-washy, and you get on your way to feeling better!

 
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Old 05-04-2013, 05:43 AM   #9
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Re: Positive ANA 1:160 & speckled...Plz feedback from any1 shares symptoms & is diagn

Hannah, my rheumatologist's office asked me to prepare a lifetime medical history, in my own words, and fax it before my first appointment. You could prepare one, and you wouuldn't even have to hand it over, just use it to stay accurate when you fill out intake forms & answer the rheum's questions.

I edited mine to one page (doctors love brevity). Bulleted lists, not sentences. Arranged in ascending date order, old to new. Early years brief, more detail for recent symptoms. Also took copies of recent labs.

I was nervous, too. Not sure why, really, as I'd seen many drs. during my life. Maybe it was the sense that so much rested on this one appt. and this one doctor? (He was fine.) But what if he HAD been dismissive or contemptuous? Correct answer to that worry? I'd have just waited for the next wave of symptoms, then tried another rheumatologist. (Never had to.) I expected to find the metro specialists harried, hurried, and rude, worse than my suburban doctors. I was so wrong.

So just head to your 5/23 appt. as concise, organized, and clear-thinking as possible. Do your part, see what happens. Hugs, Vee

 
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autoimmune disease, lupus (sle), positive ana, rheumatoid arthritis



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