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Thread: Could you please tell me what you think? Bit lost :(

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    Unhappy Could you please tell me what you think? Bit lost :(

    Hello everyone,

    I have been reading and learning a lot from this forum the last few months, and I thought that maybe some of you would be able to give me their advice while I wait to see yet an other specialist I don't know what to think...

    I am 35 years old. I started feeling unwell during my last pregnancy 8 years ago, and after it, having scary Aura preceding light migraines, including vision, thoughts and speech disturbances. I had been getting strong headaches regularly since my pre-teen years though, but no aura. MRI was normal as well as tests for epilepsy, blot clotting disorders and heart check ups. I was diagnosed with very dry eyes after complaining of constant pain in eye movements and sensitivity to light. I started having muscle pains that would move around my body through the day, had extreme fatigue and brain fog, also random chest pains, and traces of blood in urine tests. At some point the ANA test turned borderline positive but it was not investigated.

    It seemed that no doctor could find what was wrong and I heard the stress/postnatal depression talks ... Fortunately, with time I got better even though I always struggled with something at some point: fatigue, neck muscles getting 'stuck', chronic yeast infections, moderate hair loss along hair line, strong headaches several times a month, knee pains after sitting for a while, moderate random joint or bone pains, low vit D, low feritine levels... Migraine Aura were not as common but I would sometimes get visual effects, or strong 'deja vu' feeling associated with feeling sick.

    Last year I had to spend a lot of time and money at the dentist, lost two teeth and also had a very painful area on my gums that no dentist could help with, a gum specialist ended up saying it was chronic inflammation there and offered to do a gingivectomy which I refused. I could only numb it with essential oils for relief. Almost a year after, the pain is on and off, a lot more manageable, but still there some days.

    A few months ago I started having Raynaud's in my hands, and severe, red dry eyes, after experiencing two days of chest pain when I took a deep breath. I also mentioned a few rashes I have had to my GP, who ran blood tests. The only abnormal result was positive ANA 1:320. I was referred to a Rheumatologist. (They also found in the same month 1, then 2 big ovarian cysts which I never have had any before)

    The Rheumy was nice at first, gave me blood tests to repeat in 3 months. In that time I developed again the joint pains, muscle pains, moving around my body. Brain fog and fatigue became strong again too, I had muscle twitches, memory issues and my hair line is noticeably higher than before. When I saw her again:
    ANA test had come back negative,
    The DSDNA by Farr was positive 9 (neg <7)
    Complement C3 WAS 0.74 (0.78-1.50)
    Complement C4 was 0.16 (0.16-0.52)
    Because of the ANA turning negative she said that she did not need to see me again. ESR and CRP were normal, as everything else.

    I also saw a kidney specialist for the blood traces in urine, who diagnosed isolated benign microhematuria (no proteins). He also saw a patch of livedo reticulatis on my skin and wrote it down on his report. He said, as well, when looking in my eyes that I had cupped discs (?).

    I came back, totally lost, to my GP who tested ANA again and a few other things.
    ANA was negative again
    DSDNA (I don't think it was by Farr this time) was negative
    Thyroid antibodies were >1000 (lab range approx <32)

    I had a nuclear thyroid scan, everything is normal, TSH is normal too.

    So now I will be referred to an immunologist to see what kind of Autoimmune condition I have, and what could be causing all those symptoms. I think that I have Hashimoto with this very high level of thyroid antibodies but TSH has always been ok all those years, so not sure if this could be causing all my problems.

    Does it look like Lupus to you, even though the blood tests have been changing over time? I feel very confused

    Thanks for reading

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    As we are not doctors, we cannot say if your symptoms do or do not point to Lupus. Most doctors, with a negative ANA, will not diagnose Lupus. There are over 60 auto-immune diseases and to find if you are suffering from any one (or a combination) of them will require lots of additional testing.
    There is a rare condition known as ANA negative Lupus. The problem is that several of your other tests were negative also, so I assume that this is why your doctors are ruling out Lupus at this time.
    Many Auto-immune diseases have the same symptoms (an, therefore, the same medications) so it is difficult to narrow it down for most doctors. I do hope, however, that they are treating your symptoms so that you can get some relief even though a firm diagnosis has not been made.
    I wish you the very best!

    Peace and Blessings
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    Saysusie
    Look For The Good and Praise It!

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    Thank you Saysusie for taking the time to respond

    I guess I was not sure because I read that the ANA and DSDNA by Farr only need to be positive once at any time, to be counted as a criteria...
    It is hard not knowing. In regards to treatment I have been treated for the migraines, for years. I now also will have surgery in a few days to remove those big ovarian cyst who developed at the same time as Raynauld. I so hope that the next doc I see will know what's going on and most importantly will be able to prescribe something to put it all under control!

    All the best to you too, God bless you

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    I hope that your appointment with the immunologists provides some answers and, even if it doesn't, I hope that they prescribe appropriate treatment to help you with your symptoms.

    Best Of Luck To You

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    I'm curious since you mentioned ovarian cysts if anyone has suggested pcos-or has done any further investigations on that route? Or have you ever been to see an endocrinologist?

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