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    Old 03-10-2014, 11:08 AM   #16
    ladybud
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    Re: questions, labs and symptoms

    Complement levels are usually low in autoimmune disorders but sometimes they are high. The inflammatory markers are clearly elevated. Unfortunately, autoimmune diseases are never straightforward to diagnose. There are so many overlaps in symptoms, labs, and sometimes symptoms precede lab evidence by months or years. Plus lab abnormalities can fluctuate between normal and abnormal, causing confusion. It is the least straightforward area of medicine of all, IMO. Makes dealing with these diseases frustrating, as diagnosis is often elusive for months or years.

    Last edited by ladybud; 03-10-2014 at 11:09 AM. Reason: typo

     
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    Old 03-13-2014, 08:34 PM   #17
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    Hi, my labs were similar to yours. I was ultimately diagnosed with RA. Complements can be high in this. I know its incredibly frustrating when somethings going on, you know it is and the doctors can't figure it out. Hang in there though and be persistent.

     
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    Old 03-15-2014, 10:10 PM   #18
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    Re: questions, labs and symptoms

    The plot thickens. Saw my optometrist (as I was instructed to...) to discuss dry eyes and the fact that I have to peel my contacts off my eyeballs every night. He did the big dryness test (can't remember the name, I know you all know about it) and, while I'm not in the danger zone, my eyes are definitely dry enough for him to call it as something autoimmune, no question. This is VERY new for me, over the past 3-6 months easily. He's ordered me a new brand of contacts that are supposed to be best for dry eyes, gave me FreshKote drops and OTC wetting drops, and instructions to take fish oil capsules and do warm compresses daily. Also took copies of all my bloodwork to do his own research and see if he wants to refer me to yet another rheum.

    Dermatologist can't see me until June, but I'm on a cancellation list. I've seen him off and on for 20 years and he's part of one of the med schools in town. If he can't do the right test, he will know where to send me.

    Seeing pain doc/spine specialist next week. Have bloodwork organized and ready to go. My hands were so achy, stiff, and swollen today that it's taken me forever to type this. I have to keep resting them.

    Is anyone familiar with the Avise tests? Or had them? Worth it? And would a Lyme disease test be worth doing? Epstein-Barr? (I had mononucleosis in 1987, missed the first 6 weeks of my senior year in high school with it.) Even a syphilis spot (checking for a false positive)? Primary is open to ordering any tests I/we think might give us more information.

     
    Old 03-16-2014, 10:48 AM   #19
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    Re: questions, labs and symptoms

    I have read this entire thread and feel like I am reading my own story. While a lot of our symptoms presented in different order, we do have all the same symptoms. I was first diagnosed by a rheumy as having Fibromyalgia, 6 months later when I started having spasms all over, which is not a symptom of Fibromyalgia, I was referred to a neurologist who did many tests and scans. The only positive result I had was for Lyme Disease. So for the last 5 months I have been seeing a LLMD who has me on a combination treatment of antibiotics and natural remedies, with positive results. I also had 5 acupuncture treatments a few months ago which cured me of my worst nerve pain and sensitivity that I was having in my left leg. As long as I am on the meds my symptoms are so much better, practically nonexistent except for the knees, hips and back pain. We think those pains might be being caused by a co-infection (which you can have withe Lyme) that will require a different treatment plan. The recent recheck Lyme test was negative, which only means that it wasn't present in my blood for a positive test, but that doesn't mean its gone. The Lyme spirochetes have long been invading my body for years, and is in all my tissue and affecting all my body's systems. It will take a long time for total healing, if I ever will be totally healed. I share this with you because I did not see any mention of Lyme in your posts and since we do have all the same symptoms and I am having positive results from my treatment it might be worth looking into and going to see a LLMD. I don't ever recall being bitten by a tick. I never had a bullseye rash. There are those that believe there are other ways to contract it, and I believe it seems possible.
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    Old 03-16-2014, 06:06 PM   #20
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    Re: questions, labs and symptoms

    Hi. Your very dry eyes make one think of Sjogren syndrome even though your anti-Ro (SSA) test was negative. Anti-Ro is heavily associated with Sjogren but not absolutely required IF certain other criteria are met. You could ask your doctors to explain the current diagnostic criteria. Also, some AB's rise then recede, and maybe anti-Ro is known for doing this---I don't know, but you could ask.

    Was the test your optometrist did a Dry Schirmer test? I think two other ones used to assess for Sjogren syndrome are Rose-Bengal corneal staining and lip biopsy (ouch).

    Keep us posted & good luck!

     
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    Old 03-18-2014, 09:56 AM   #21
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    Re: questions, labs and symptoms

    VeeJ -yes, the Schirmer test.

    Latest development - had a regular appointment with my bariatric surgeon today (still prepping for surgery this summer). I had all my lab stuff with me. He's known that autoimmune is a possibility and that I've been pursuing a diagnosis. I filled him in on the latest 'nothing wrong' appointment, and he basically called bull%[email protected]# on it. Obviously he has a responsibility to not operate if it isn't safe for me, so he's kind of taken control of things and is going to act as my advocate in my search. He says he knows of specialists (including a rheumatologist and neurologist) who specialize in diagnosing and treating 'square pegs' like me. And, he knows they will figure out exactly what's up and get me started on treatment because he's seen them do it before. We know that whatever this is is going to be seronegative or subclinical, and is definitely presenting out of the ordinary. So, he's making his calls and is setting me up with who he thinks I need. I can't wait! He is awesome and I'm so thankful for him. (His non-specialist call, by looking at my lab work and symptom list, is lupus. Same as my primary called it.)

    Today's new symptom is absence of pain, but it feels like my entire body is numb. I keep fumble fingering everything and tripping over my own feet. Lots of mild tingling all over too. Big time brain fog, that my Adderall isn't cutting through. And I didn't sleep that well because no matter how I got comfortable, within a few minutes at least one major limb would go to sleep.

     
    Old 03-18-2014, 11:23 AM   #22
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    Re: questions, labs and symptoms

    Latest developments sound good, a far better path. Let us know how you're doing & what you're finding out. Good luck!

     
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    Old 03-19-2014, 01:02 PM   #23
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    Re: questions, labs and symptoms

    Have you been seen by an Endocrinologist yet? They would be able to tell you what autoimmune disorder, if any, you might have. I does sound to me like you are Hypothyroid. I have many of your symptoms and I have been diagnosed with Grave's disease, now Hashimoto's thyroiditis, fibromyalgia, and a undiagnosed muscle and/or connective tissue disorder. My hair has been falling out, I have optic neuritis(dry eyes, inflammation, red watery eyes), light sensitivity, diffuse muscle pain/spasms and joint pain
    specific joint pain (hips, back, both thumbs, muscle weakness (bilateral)
    swelling in hands and feet, red facial, neck and upper chest flushing, sensitivity to cold, chronic fatigue, vision changes, migraines, numbness throughout most of my body, pins & needles, cellphone feet, legs, arms and hands (vibration like when your cellphone is going off), blood pressure problems, muscle wasting, etc. Other likely conditions include, Lupus, MS, RA, or perhaps 1 of the 100 HLA B27 syndromes.

     
    Old 03-20-2014, 08:21 AM   #24
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    Re: questions, labs and symptoms

    I am familiar with Avise-SLE test, and think it is good for hard to diagnose cases with borderline or negative ANAs. Your ANA is significantly elevated at 1:320, and your case not that "fuzzy". If your rheums ignore your ANA, anti-DNA, high CRP and sed rate, THEY are the problem, not your case. I think the new opinions will be helpful. I would ask that they check your muscle enzymes (CK and aldolase) since you have weakness and pain, indicative of possible myositis (muscle inflammation). I would also want a repeat anti-dsDNA done during a flare, in case it is higher, which they surely would pay attention to. Let us know how the "square peg" docs do, and I hope they at least give you a presumptive diagnosis so you can get started on some treatment and feel better!

     
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    Old 03-21-2014, 07:53 AM   #25
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    Re: questions, labs and symptoms

    IAmToast - I do have an endocrinologist, he treats me for my Type 2 diabetes. I've also been hypothyroid for 15 years. My thyroid is monitored with blood tests (full thyroid panel) every 6 months. He has said that I need to see a rheumatologist...like every other doctor (except for the rheumatologists) have said.

    LadyBud - this is one of the problems I'm running into, that the rheums are all saying that my ANA is 'not clinically significant'. I've been told that most people have an ANA at least that high if not higher, with no autoimmune problem, that if I exercise more and lose weight, the ANA will go back to normal, and that 1:320 is well within normal levels and I'm making something out of nothing. Every doctor I see says I'm not making something of nothing except the doctors who are supposed to be diagnosing and treating it. I will add those lab tests to my list for my next appointment to ask about, thank you.

     
    Old 03-21-2014, 08:18 AM   #26
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    Re: questions, labs and symptoms

    Starting a new reply with the results of today's pain management appointment, so things don't get too jumbled up in one post. Pain doc says it's Myofascial Pain Syndrome and/or Fibromyalgia. I had the my lab tests with me, and he had what the spine surgeon sent over. Once again, my ANA is 'insignificantly elevated' (his words) and that we should disregard it. He thinks that the inflammatory markers the blood tests picked up are indicative of fibro. We did do the trigger point test, and while they are tender, they weren't painful enough to make me flinch. He also had the pictures of my MRI (keep in mind, he's a pain specialist AND a spine specialist) and said my MRI looked 'fantastic' and there was nothing that needed to be done there. The WHOLE REASON I was referred to him was because of my slipped disc, one near to slipping, and obvious nerve involvement from the degeneration of the discs in my lumbar spine - as diagnosed by the spine surgeon! I have a copy of the MRI notes, and the issues are made clear on that report. I am completely flummoxed here.

    As far as the remaining lab tests, he does not see anything to diagnose either. Same with most of my symptoms. Could not explain the hair loss and heat/sun intolerance. For the achiness, stiffness, swelling, and loss of grip strength in my hands, he suggested getting a referral to a neurologist about carpal tunnel, as he saw nothing that would cause that. Said both the muscle and joint pain were from the Fibro, both achiness and sharp, stabbing pain. Protein and casts in urine - have I gotten an antibiotic for that? (Yes.)

    So...in short I'm not sure I believe him. I accept the idea that I might have Fibro/MPS in addition to an autoimmune issue. I know that can be possible. And, we've agreed on an immediate plan to treat the pain, which will help me be more comfortable while I keep looking for answers. We are upping the gabapentin, slowly, possibly as high as 1800mg a day, but we will stop when I feel like I'm at a good place, wherever that is. Tramadol for breakthrough pain, tizanidine at bedtime. He really wants me on Cymbalta, but it's cost prohibitive right now, so I am waiting. I am to keep going to PT, and I am to exercise 20 minutes every day outside of my 10 hour active work days. Because, according to him, exercise will lower my ANA (???????) and relieve pain. (Spine surgeon said no exercise at all until PT determined it was safe, which both PT and surgeon have agreed it wasn't safe now.)

    At least this one didn't tell me I hurt because I'm fat. But he basically said I hurt, but there's no reason why. Doesn't make me feel better. Onward with the search...

     
    Old 03-21-2014, 09:11 AM   #27
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    Re: questions, labs and symptoms

    I think this guy is full of you-know-what! 1:320 is not an insignificant ANA, and exercise does not lower the ANA. How is it that he thinks your MRI looks fantastic when it does not? He is either uninformed or just dismissing your problems, and I would keep searching for a rheum who will see the forest AND the trees. Protein and casts in urine are two signs of lupus, not treatable with antibiotics unless an infection is clearly present, manifested by high WBC in urine, nitrites, bacteria or + culture results. You might call your local lupus foundation and try to get the name of a good rheum in your area. So frustrating to get the brush off over and over. Please don't give up and go with your gut on what you choose to believe!

     
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    Old 03-21-2014, 07:33 PM   #28
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    Re: questions, labs and symptoms

    Thank you ladybud! I am certainly going to keep looking. I can't begin to understand what this doctor didn't see in my MRI results. I mean, the surgeon and I spent a good amount of time with him showing me the films and explaining to me what each thing was, what it was doing, where the damage was, and even provided me with a copy of the report where everything was listed. I was send there specifically for the purpose of getting the injections for the spine pain. I did call the surgeon and left a message about what I was told, and did he want me to continue with this, or refer me to someone different. Because, I mean, I'm not getting the treatment that he (and my PT) said I need.

    I am absolutely going to keep looking. At least now I have some help with the pain while I look. But why cover it up when I could be treating the source?

    I don't see why a 1:320 ANA is so concerning to everyone except the people educated to know why this should be concerning.

     
    Old 03-22-2014, 12:13 AM   #29
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    Re: questions, labs and symptoms

    I am glad you reported this to the surgeon and asked for someone else. It is generally considered an ANA of 1:40 and 1:80 are low +. 1:160 and above is clinically significant. It is absolutely untrue that "most people have a + ANA". You have meaningful symptoms to go with the lab data as well. I can't understand why so many women get dismissed who have serious symptoms, backed up by abnormal labs. It makes me want to go on a campaign to educate these Drs and instill a little compassion and desire to help in them. Your story is just one of hundreds like it that I have read on these boards. We must have fortitude and assertiveness to get what we need, A diagnosis and treatment!

     
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    Old 03-22-2014, 08:53 AM   #30
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    Re: questions, labs and symptoms

    I did check our local lupus foundation website (which is kind of bare), and two of the rheums they have listed are the ones who dismissed me. Another is one that I know enough about that I would never see him or refer anyone to him. I do have a recommendation from a friend to her rheum now, but I also want to see what my bariatric surgeon comes up with too.

    The doctor who ran the urine tests where the protein, casts, WBCs, and positive culture (bacteria) showed up was a rheum. He gave me a script for Bactrim, patted me on the head, and sent me on my way.

     
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