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    Default Hello, new here and undiagnosed

    Hello all,

    I found the forum while doing searches to answer questions. I'm not sure where to begin because my history goes pretty far back.

    In my late 20s after my second son was born, I came down with something flu-like and it stayed for a while. My symptoms were widespread pain (little to no joint swelling), chronic fatigue, poor sleep, and restless legs at night. I went to the family doc and he said we eventually find that I have fibromyalgia. Keep in mind this was in 1997.

    About the same time, I also had one severe panic attack that involved tunnel vision, faded hearing, and tingling in my fingers. I thought I was dying. I was under a lot of stress in my marriage, at work, and with two babies. Family doc did a CT scan to rule out things and an ultrasound in my left calf where I have swelling from time to time. He said he thought it was anxiety, which I have had plenty of issues with and seems to run in my family.

    The pain was hard to deal with and the muscles in my neck and shoulders would seize up. And I had pain pressure points at various places but perhaps not enough for an actual fibromyalgia diagnosis. I also had a skin discoloration on the bridge of my hose which a couple of bumps/pustules which faded over time. It was a light reddish brown color but did not spread to my cheeks. I am a light white person with dark brown hair and green eyes. Also, it did not seem to react to sun.

    Most of the pain, restless legs, etc. faded out with no treatment over a couple of years. I have had recurrent fatigue, shoulder and neck pain, and migraines since.

    Then last year - January 2012 to be precise, I came down with a rash on the back of my neck and above my hairline. The neck rash faded out over a couple of months but the rash on my scalp turned into lesions that became inflamed and pussy. Then it seemed to go to my ears - outer ears - and can create fluid affects my hearing. It's all itchy and I have OCD which compels me to scratch so I have to be careful. Went to the doc finally in April and she wasn't sure what it was and prescribed a five day prednisone pack, which did not agree with me at all (mentally), and Clobetasol Propionate Shampoo.

    It cleared up and then came back. She told me I have exzema, psoriasis, or seborrheic dermatitis and referred me to a dermatologist. In the meantime, I developed joint pain and swelling in my feet, ankles, knees, wrists, and fingers. The dermatologist checked me out and did a biopsy on one of the bumps/pustules/plaques and the result was seborrheic dermatitis. I don't know exactly what the biopsy tested for. I was prescribed Fluocinonide. And the derm didn't comment on the swollen joints and pain.

    The joint swelling and pain was bad enough to wake me up at night and was worse in the morning, fading through the day with NSAID. The worst of it was in December 2012 and January 2013 and then in faded it out somewhat.

    In late May/early June, my rash got worse on my scalp and in my ears and came back on the neck. Pustules developed and became plaques in both scalp and ears but it's not as bad as some pics on Google pics. I have lost hair in back but not too much. I have major swelling in my wrists and some fingers. Had to get a new wedding ring because I went from size 6 to 9. My fingers look sausage-y and the slightest pressure on my wrists can hurt.

    Anyway, I wonder if any of you have had similar symptoms and experiences. And could give advice on how to proceed. I've had other issues to address - developed high blood pressure sometime between November 2012 and May 2013. We've been working on that. And I've been diagnosed by a pdoc with ADHD, tics, OCD and tricky anxiety stuff. So we've been working on that with meds and counseling.

    I've considered that my issues might be somatic, but darnit, they are very easy to see. If you've taken the time to read my long post. Thank you. Any advice is appreciated.

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    Hello and welcome to our family! I am so sorry to hear that you have been suffering so long with no definitive diagnosis. I am sorry to say that your symptoms are so very familiar to many of us living with and auto-immune/connective tissue disease. The lesions, plaques, hair loss etc. are symptoms that many of us have dealt with as some of the many rashes that people with Lupus develop. The inflammation, swelling of joints and so forth are also very familiar to us. If you had been diagnosed with Lupus, I would say that your Lupus is quite active and has been for some time.
    Lupus (as with most AI/connective tissue diseases) changes within us. Symptoms come and go, the get better and then they get worse. Some symptoms disappear entirely only to be replaced by brand new symptoms. These diseases are ever-changing.
    For many of us, it took months to years to get a definite diagnosis due to the changing nature of these diseases. Also, there are some who have never received a firm diagnosis and are told that they have MCTD (mixed connective tissue disease) or UCTD (Undifferentiated connected tissue disease).
    It might be up to you to ask your doctors to start testing you for an auto-immune and/or connective tissue disorder. I always advocate that we must take control of our health care, educate ourselves about our illnesses and our bodies and demand that our doctors run appropriate tests and prescribe appropriate treatments.
    While we cannot tell you that you do or do not have these issues, we can only say that the symptoms you describe are found in these types of disorders. I do wish you the very best and I hope that you and your doctors are able to find an answer and a treatment for your issues.

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

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    Quote Originally Posted by Saysusie View Post
    Hello and welcome to our family! I am so sorry to hear that you have been suffering so long with no definitive diagnosis. I am sorry to say that your symptoms are so very familiar to many of us living with and auto-immune/connective tissue disease. The lesions, plaques, hair loss etc. are symptoms that many of us have dealt with as some of the many rashes that people with Lupus develop. The inflammation, swelling of joints and so forth are also very familiar to us. If you had been diagnosed with Lupus, I would say that your Lupus is quite active and has been for some time.
    Lupus (as with most AI/connective tissue diseases) changes within us. Symptoms come and go, the get better and then they get worse. Some symptoms disappear entirely only to be replaced by brand new symptoms. These diseases are ever-changing.
    For many of us, it took months to years to get a definite diagnosis due to the changing nature of these diseases. Also, there are some who have never received a firm diagnosis and are told that they have MCTD (mixed connective tissue disease) or UCTD (Undifferentiated connected tissue disease).
    It might be up to you to ask your doctors to start testing you for an auto-immune and/or connective tissue disorder. I always advocate that we must take control of our health care, educate ourselves about our illnesses and our bodies and demand that our doctors run appropriate tests and prescribe appropriate treatments.
    While we cannot tell you that you do or do not have these issues, we can only say that the symptoms you describe are found in these types of disorders. I do wish you the very best and I hope that you and your doctors are able to find an answer and a treatment for your issues.

    Peace and Blessings
    Namaste
    Saysusie
    Thank you Saysusie for your response. My family doctor has agreed to test me for auto-immune disorders based on my history and symptoms and I feel very positive because I think diagnosis is the first step to treatment and obviously self acceptance and lifestyle changes. I have been a white-knuckled person throughout my various flares and realize I can't continue at this pace much longer. Feels that way anyway. I have worked the whole time and became an expert consultant in my field. Don't know how it was possible but it was - other than self employment allows scheduling freedom.

    I agree that we have to take charge of our health care, etc. So I will be tested this week and gather past medical records from back in the day. Try to make some sense of it. My psychiatrist ran full panel for normal stuff, i.e. cholesterol, liver, kidney, thyroid, diabetes. Then my family doctor ran a panel on my hormones - only interesting thing was somewhat high DHEA based on my age and am not sure how that might correspond, other than my periods and cycle are still like clockwork, and I look like I'm in better shape than I am. Lol... etc.

    I've been pretty healthy other than my autoimmune symptoms and my weight/bmi is excellent for a woman my age. Dang. The increase in blood pressure threw all of us and that it corresponded with a major flare, or continuing one.

    Thank you again. I will report back with test results. Or perhaps sooner if issues come up.

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    I hope your pcp is a good doctor and runs the much needed test they should request an ANA panel first lol and if they do see if you can get a C4/ C3 complement ran as well so you don't have to keep drawing blood from my experience having the two hand in hand will get you a lot further. I wish someone would have told me that this time last year when my symptoms first started. Every other month I have blood work July the ran 26 blood test on me and it required me donating 10 tubes of blood and from all the test they keep running those two and kidney function are the repeat offenders. Even if your pcp doesn't see the point in it, try to have it done and look it up so you will have an understanding of how the results may or may not pertain to your condition. And keep in mind a diagnosis may take years so really the important thing is getting some type of treatment plan together. My pcp and Rheumy got my treatment plan together and it took a year to put a diagnosis on me (8-6-13 just got it yday) the treatment they started me in has helped lower my activity judging by my blood test. Be sure to keep us updated and if you hate having your blood drawn then I HiGHLY recommend you ask them for an Ana panel and C4/C3 complement test to get it out the way that way if they are positive panel and low complement they will get you on at least a mild treatment. I HATE having blood drawn <------ lol can you tell????

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    Thanks, Leaniebean,

    Totally appreciate that you shared your experience and I will request the C4/C3. Lol, I'm okay with having blood drawn but I'm not fond of it either - one of the few things I'm not phobic about!

    Glad you finally got the diagnosis! Unanswered questions addressed.

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    Oh YEAH lol

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