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    Old 11-26-2015, 06:30 PM   #1
    Phillygal34
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    Undiagnosed and frustrated--IUD?

    Hi everyone. I'm new to this world and so so frustrated. I had a baby in March. A few months later I started to feel extremely fatigued (as in 14+ hours of sleep at night), had bilateral carpal tunnel syndrome and tingling in my feet and gained weight despite nursing. My doctor thought it was my thyroid and tested everything. It was normal. She then did an ANA and it was positive at 1:160.

    I saw a rheumatologist who said it was likely a fluke and maybe I was one of the few who had a false positive. She sent me for extra blood work anyway. In the meanwhile I got nasty psoriasis (never had it before) and bad eczema on my hands and feet (again new). I went to the allergist who said it was eczema and gave me steroid cream. It reduced but hasn't gone away (over a month) so I went to the dermatologist. They did a biopsy which came back positive for connective tissue disorder/an autoimmune disorder. ANA was again positive at 1:160 speckled and c reactive protein quant at 9.5 mg/L. The fatigue is better but I've become really sensitive to metal. I can't wear jewelry or even an underwire bra or I get hives. I've also had some upper extremity joint and arm pain. It's tolerable with Motrin and goes away after a day or two.

    They said maybe it is lupus but I don't think I have enough of the symptoms right? I got a mirena 6 weeks after my son's birth and before any of this. Drs don't seem to think that is it but I had it removed anyway. I just want to feel normal again. I feel like I'm in someone else's body.

    Last edited by Phillygal34; 11-26-2015 at 07:06 PM.

     
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    Old 11-26-2015, 07:06 PM   #2
    Phillygal34
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    Re: Undiagnosed and frustrated

    Eta- I've read that an IUD can cause high CRP. Is it possible my body has been fighting the IUD?

     
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    Old 11-27-2015, 07:30 AM   #3
    MSNik
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    Re: Undiagnosed and frustrated

    Hi Philly gal. I am also from Philly. You have alot of crazy symptoms, dont you? Anything is possible, including this being caused by the Mirena.

    Lupus, has a cousin. Its called Multiple Sclerosis. And, I have MS. My symptoms are very similar to yours....I am also unable to wear jewerly, although ten years ago, I wore a ton of it daily. I also have pins and needles in my feet and my hands...I am always fatigued, and sleep more than normal, including taking naps whenver possible. My onset symptom was the numbness in my hands, which took me to my doctor who said it was probably a pinched nerve and sent me for a CT scan. The CT scan showed abnormalities, and a Neurologist was called in. He sent me for a MRI, and this showed the disease.

    I dont want to scare you because there is only a 1: 400 chance of actually having MS, but seeing a neurologist and getting checked out is something I would recommend to you. Similar to a Rheumy, they both deal with autoimmune diseases, but the Neuro has more experience with the brain, which is many times what causes the pins and needles.

    I would talk to your referring doctor about his or her thoughts on this and ask if they think it is worth seeing a neuro. I highly recommend U of Penn neuology dept, as they have specialists who deal with every type of neurological disorder. I go there myself as does another person in my family.

    best to you
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    Old 11-27-2015, 01:32 PM   #4
    ladybud
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    Re: Undiagnosed and frustrated--IUD?

    I think your rheumatologist was premature in calling the 2 ANAs false positives and a "fluke". Many women who develop lupus do so shortly after giving birth. The skin rashes and sensitivity to metals can be part of that. Since your biopsy showed an autoimmune disorder in the skin, it could be that it is starting with the skin, fatigue and joint pains, but hasn't fully developed yet. I think the rheum now needs the skin biopsy report to take a second look at the overall picture. Also, it would be wise to note whether your rashes, fatigue and joint pains (any or all) worsen after sun exposure, as that is a characteristic sign of lupus, and should be reported. The tingling could be from Vit B12 or folate deficiency, and those should be measured in blood and supplemented if low. B12 deficiency is especially common in lupus. You might look at the sticky posts at top of lupus board here for other common, but not all inclusive, signs of lupus. An autoimmune "Panel" should be done on blood too to look for more specific antibodies that will help in sorting this out. Good luck, and hope you feel better soon.

     
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    Old 11-27-2015, 04:17 PM   #5
    Phillygal34
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    Re: Undiagnosed and frustrated

    Sorry I don't think I was clear (I'm a bit overwhelmed)

    The tingling in my hands and feet was presnent off and on for a week or two back in June. I haven't had it since. (Not sure if that matters regarding: ms)

    The rheum said the first Ana may have been a fluke. After the second and the biopsy she agrees something else is going on. I'll keep an eye on if they occur after sun exposure.

    They did a bigger panel with smiths and sjogrens and a bunch of others (all negative) I don't see B12 but there is one set of tests that aren't showing up in my health portal.


    I really appreciate your input. I see the rheum in the first week of feb for a follow up unless things get worse

     
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