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    Old 07-03-2015, 01:42 PM   #1
    WonderCat
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    Question New with questions

    Hello! I've been reading through the message boards off and on for a few months, and decided to join today. I'd love opinions re my situation...

    I became ill in October and haven't felt back to 100% since then. I've been sick (low grade fever, aches and pains, sore throat) 4-5 times since then.

    In February I was DXd with hypothyroidism and then Hashimoto's. I'm on .075mcg of Levothyroxine and follow an AIP diet very strictly. My TSH, T4 and T3 are all good now, and my antibodies have significantly decreased.

    I still don't feel well. I'm exhausted - as in I'm too tired to roll over in the morning to see what time it is, or to get my thyroid medicine off the nightstand. I get 10-12 hours of sleep and I'm still tired and yawn during the day.

    I have horrific joint pain. I've had what I consider to be 3 flares. Unilateral joint and muscle pain (elbow to shoulder) on my left side, thigh to knee pain on both legs, and the knuckles on my left hand ache. When I've had flares, my left arm and upper legs/knees have hurt so bad that I've begged my husband to cut them off. It's intense. If I dry my hands too hard it hurts. Difficulty walking first thing in the morning. Gets Better after about an hour, but pain is constant.

    Lots of CNS issues... confusion, memory loss, brain fog, I look at #s and get them confused, periventricular white matter in my brain (2 MRIs & neuro said not in an MS pattern), unilateral left side hand tremor, head tremor, headaches (used to be migraines but those have subsided), eye twitching, ringing in ears, hearing loss, vision loss (within 8-9 month period). These are things that have slowly gotten worse.

    Skin: sun sensitivity - my skin hurts if exposed to too much sun. This has happened for the past few years. I remember telling my mom that I think the ozone layer is so messed up that the sun now literally causes me skin pain. Sometimes I get a rash but I have a lot of freckles so it's hard to see. I had melanoma so I stay out of the sun and use sunscreen 99% of the time.

    ANA test = moderate positive
    ANA w/ reflex = 1:160 homogeneous
    Western blot band 41 = reactive (thought I had lyme but only tested reactive for band 41 which could be lyme, syphillis or periodontal disease). I don't have syphillis or periodontal disease - false positive for syphillis = lupus?
    Double strand DNA, Smith's and Sjogren's were all negative.

    I'm allergic to 7 RXs, including penicillin and sulfa.

    I've had a bunch of other labs done too. Oh, also have the MTHFR C677T mutation. Still trying to figure that one out.

    Anyway, I have an appt scheduled with a rheumy. My neuro thinks it is lupus, but I know 1:160 isn't a strong ANA. Do you think my symptoms indicate lupus? If not, I'm at a loss. I guess my next step would be paying $800 for an Igenex lab test for lyme. I'm not sure what to do or think, and I want to be prepared to have a reasonable discussion with the rheumy.

    Thanks so much in advance!!

     
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    Old 07-06-2015, 05:35 AM   #2
    VeeJ
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    Re: New with questions

    WonderCat, hello & welcome. First off, I'm very sorry for your symptoms . I'm just a patient (lupus) so can't know what's doing all this, but here are several questions you could ask & things you could double-check.

    Unilateral pain. Perhaps the phrase that struck me the most is that your pain & weakness are unilateral, not bilateral. To my knowledge, pain in lupus is typically bi-lateral, and I think same is true in RA (not 100% sure). That said, any good rheum would very likely look at RA and various other "close cousins" to lupus, like Mixed Connective Tissue Disease, etc.

    Syphilis test & lupus. Actually a false-positive on one of the syphilis tests (but I'm not sure WHICH syphilis test, sorry) is seen in people with antiphospholipid syndrome (APS), a blood clotting disorder. APS is also called "sticky blood syndrome", which better conveys what it is. While 1/3 of people with lupus have the culprit autoantibodies, it is possible to have APS without having lupus. Above the user threads you'll see some "sticky posts" (permanent info posts), where you can find more info on APS.

    Neurological issues (tremors, eye twitching, etc.) I'm guessing other AI's, not just lupus, and some conditions other than the AI's could cause some of those symptoms. For example, within the AI's: Myasthenia Gravis, and maybe the inflammatory myopathies (Myositis and Polymyositis). But again, that your symptoms are unilateral could be significant.

    I hope things fall into place FAST. When do you see the rheum, or have you already? We'll watch for your updates. Meanwhile, wishing you better days and sending hugs, Vee

     
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    Old 07-06-2015, 08:49 AM   #3
    WonderCat
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    Re: New with questions

    Thank you VeeJ! I know many of the AI diseases are hard to diagnose because so many have overlapping symptoms. I read about APS and was wondering about that as well. I see the rheumatologist on Thurs. I'm hoping I can get some answers, but I have a feeling she'll order more blood tests... so maybe in a week or so I'll know more. I'd just like to get some relief.

     
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    Old 07-06-2015, 09:04 AM   #4
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    Re: New with questions

    Welcome to the boards! Glad you decided to participate. Several of your symptoms fit with lupus or a similar AI disorder. It will be important to try to narrow it down to see which one it is. The sun sensitivity is pretty important in the lupus symptoms list. An ANA of 1:160 is considered "clinically significant" by most rheums. You really need 2 + ANAs to fit the ANA criteria. I would ask the new rheum to check your APL antibodies, as that would satisfy another criteria if + and would require something for clot prevention, at least a baby aspirin daily. Your morning stiffness is certainly significant and points to a rheum condition as well. Your CNS symptoms are frequently seen in lupus too, and the fact you have Hashimoto's makes you more prone to another AI disorders, as they often occur in multiples. I do hope you get a top-notch workup, including anti-dsDNA, anti-Smith, anti-RNP (all antibodies), tests for rheumatoid arthritis, a urine analysis (important and often overlooked), see rate, CRP, and complements C3 and 4. Of course a CBC and chemistry profile are usually done too. I hope you get back to us, as you learn more. There is lots of support here for you and "veterans" with lupus, etc. who can share their experience.

     
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    Old 07-06-2015, 09:34 AM   #5
    WonderCat
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    Re: New with questions

    Thank you ladybud! I'll definitely ask about the APL test. I've had most of those other tests but wasn't sure if it's be helpful to post those results. I'll do that below. Thanks again!

    WBC Feb 2015: 4.8 (3.4-10.8)
    WBC June 2015: 4.7 (4.0 - 11) different lab than first one
    RBC Feb 2015: 4.8 (3.77-5.28)
    RBC June 2015: 4.93 (3.7-5.4)
    CRP Feb 2015: .96 (0-3)
    CRP June 2015: <0.5 (0-.9)
    Platelets Feb 2015: 226 (150-379)
    Platelets June 2015: 187 (140-400)
    Sed rate March 2015: 6 (0-20)
    Homocysteine June 2015: 19.6 (<10.4)
    Positive MTHFR mutation for one copy of C677T
    RA factor June 2015: 11 (<14)

    E following were all in June when I got the 1:160 homogeneous titer
    ANTI-SJOGREN'S A (S) Negative Negative
    ANTI-SJOGREN'S B (S) Negative Negative
    ANTI-SMITH ANTIBODY (S) Negative Negative
    ANTI-SMITH/RNP ANTIBODY (S) Negative Negative
    ANTI DOUBLE STRAND DNA (S) <10 <10


    I have a lot of other test results. I've lost track of how many vials I've had drawn. I'll post an update after my rheumy appt. I really like this message board. Aside from my autoimmune issues, I've had a bunch of other medical issues, so this is a good board for me.

     
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    Old 07-07-2015, 11:57 AM   #6
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    Re: New with questions

    With your homocysteine so high and a + MTHFR mutation, I hope you are on a supplement of B12, folic acid, and B6 to get the homocysteine down. That is a risk factor for atherosclerosis, heart attacks, strokes, blood clots. They usually prescribe high doses of these B vitamins, and recheck homocysteine levels to try to get them below 10. You might benefit from daily low dose aspirin too, to prevent clots. I would ask your Dr. about that, and checking the APL antibodies, which also predispose to clots. Glad you are finding the boards helpful!

     
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    Old 07-07-2015, 03:05 PM   #7
    WonderCat
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    Re: New with questions

    I'm using Neuro-Immune Stabilizer topical cream at the advice of my functional doctor. She had me start using that when my homocysteine results came back. It has B6, 12, D and a few other things in it.

    I was wondering about APL, especially with my neuro symptoms. I'll make sure to ask the rheumy about that at my appt on Thurs. I'll also ask her about aspirin.

    Thank you!

     
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    Old 07-14-2015, 09:14 AM   #8
    WonderCat
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    Re: New with questions

    I received the results from one of my blood tests. I have an another appt with my rheumy on Thurs., but in the meantime I'm trying to figure out what these results might mean. If anyone can help, I'd greatly appreciate it. These tests are so much more complicated than thyroid tests!

    Protime 11.9 sec (11.8-14.5)
    APTT (PTT) (B) 30 sec (23.2-35.3)
    DR viper venom screen ratio 1.1 (0-1.1)

    To me the Protime seems borderline slow. I have no idea about the APTT, and I saw that there's a calculation to get the DRVVT not be a ratio, but I can't figure it out.

    I have some more tests that I haven't gotten the results for yet. I had 9 vials drawn last week, so hoping to get some more info soon.

     
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    Old 07-28-2015, 07:23 AM   #9
    VeeJ
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    Re: New with questions

    WonderCat, have you gotten your labs back? Or an explanation of your most recent borderline Protime and borderline DR viper venom?

    Couldn't agree more that the decision tree for clotting tests is wildly complex. I saw one recently that I won't even attempt to explain since there's no way I could do so accurately. Loosely speaking, it looks to me like doctors must work thru MANY possible reasons for clotting abnormalities. Problem is, there are MANY more in addition to antiphospholipid syndrome, including genetic mutations, etc.

    The main thing I *think* I see: that PT and PTT look for *two separate subsets* of possible clotting issues, each subset containing multiple possibilities. Thus if one test is normal but the other isn't, that the doctor next must drill down further into the abnormal category.

    Some "help", huh? I hope you update us soon. Good luck!

     
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