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Thread: Hi, new to everything! 10yrs and still no dx!

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  1. #1
    Join Date
    Aug 2012
    New hampshire
    Thanked 15 Times in 10 Posts

    Default Hi, new to everything! 10yrs and still no dx!

    Hello, my name is darla, I'm happy to be part of a board, I'm hoping to gain some friendships, advice, and most of all not feel so alone!

    I won't go into a long story but in a nutshell, my sytoms started around age 16. I got juvenile rheumatoid arthritis in my eye randomly and it lasted about a yr. What then followed was the most horrible of all, I endured 8 pregnancy losses, 5miscarriages, 2 second trimester still births and one son who passed away after 6hrs. I am blessed with 3 beautiful kids, my son who's 13, my step daughter who's 10 and my lil miracle girl who's 2. Out of 10 pregnancies, 4 (that we know for sure) had major placental issues. At age24, I heard "lupus" for the first time. Most of the vague blood tests then were normal though. During all those yrs I suffered with skin rash, redness on my cheeks and nose, and anemia ( had 2 transfusions), I had extreme protenoria (10xs the normal amnt if protien in urine). As well.

    Around age 25, my knees started acting up, very painful an swollen. Then at 29 I started becoming extremely tired, nausea a lot, and more joint pains strarted. I then found an ugly case of livido reticular is on my breasts, stomach and thighs. I got pregnant soon after and was violent,y I'll the entire pregnancy. I did have a healthy baby though, 27 wks of bed rest, progesterone shots, aspirin etc...all worth it!

    After I had her more things started coming up, so. Had blood taken, at the time. My Ana was normal
    but I found out I had 3 blood clotting disorders, including the lupus anticoagulant and antiphospholipid syndrome. Bloods have fluctuated a little since then and recently my protien c reactor was abnormal.

    In the last yr "outwardly" symptoms have become quite aggressive, on top of the rashes, I have eye floaters, occaisional night time incontinence, mood swings, worsened depression, weakness in limbs, worsening joint pain all over, alopecia, headaches, extreme fatigue (can't get off the couch or out of bed some days), The blood clotting disorders, the antiphospholipid, dry eye feeling, extreme,y dry feet, and my newest is peripheral neuropathy (boy is that hurts!) I'm sure I'm forgetting something haha that's it, memory loss, concentration issues as well. Some people asked if I've been tested for MS, no I have not, and I know some of th symptoms mach, but the number one leading cause of recurrent miscarriages is lupus (or antiphospholipid commonly seen moistly in lupus). So that's where the difference lies.

    I have been to a rheumy, a dermy, a hemo doc, a foot doc. Hated the rheumy and hemo! Due to the aggressive nature of the onset of symptoms and the neuropathy my gp has me referred to another rheumy and a neurologist as well, thank God! But of course it's over a month away. It is one of the best in the state though, I live in NH and will be seen by dartmouth hitchcock.

    Well, this turned out longer then expected, sorry and thanks for reading. I don't have a lot of people to talk to, my hubby just doesn't understand (until I get a def dx he won't even consider the possibility) and it makes it even harder for me. Both my mom and sister have fibromyalgia and possible lupus at this point so they understand but that's about it. I've been denied ssi twice, so I'm really hoping to get a dx, whatever it may be when I see the docs at Dartmouth.

    Any advice would be appreciated, it's been a very long, hard rd and I'll actually be relieved when something is ruled out or in (kinda sad but after so long, I need validation that I'm not crazy!) does this sound like lupus to you? Or am I crazy lol....I have been told that more likely then not it is lupus or some other connective tissue/autoimmune disease. I just need the definite!

    Sorry to ramble, thanks again, I'm always open for advice and please excuse any spelling errors (auto correct tends to correct things that weren't broken!)


    Ps-anyone taking neurontin? If so, whatarethe sideeffe ts and does it work? I have it, but have de yaws myself from taking it due to the nasty side effects I heard:/ thanks again!
    Last edited by Deemarie1223; 08-22-2012 at 01:02 PM.
    *Darla*-forever awaiting answers-

    Romans 5:5 "Hope does not disappoint"

    "If it wasn't for bad luck, I'd have none at all-and I'm Irish!"

  2. #2
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Hi Darla,
    Welcome to WHL! You have found a whole cyber family of people who understand.
    Many of us have gone through those long years of trying to get a diagnosis, and we all understand that it sounds strange, but we are often relieved when we finally find out. Then again, many of us have gone through being diagnosed by one rheumy and then un-diagnosed by another.
    Autoimmune issues are frustrating!
    I only had a problem with a pregnancy once, when I miscarried twins, but it was long before AI issues were suspected. I'm happy for you that you were able to have a family. There are quite a few members here who have had the same problems and happily, we've had quite a few members who have recently had babies - yay! I'm sure that you will meet some of them soon.

  3. The Following 2 Users Say Thank You to magistramarla For This Useful Post:

    Deemarie1223 (08-22-2012), Saysusie (08-24-2012)

  4. #3
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
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    hi darla, and welcome.

    i also had symptoms for a while before being dx.
    i went about 30 years before i was tested.... to rule out lupus.

    i also have fibro, like your mother and sisiter.

    one of the things that has helped me a lot is depression medication.
    i take it not because i am depressed... but because my brain needs it to function properly.
    i have found that a mixture of 2 different types gives me the best results.
    please see your doctor and discuss this option.

    please keep us updated with your results as they happen.
    again welcome.

  5. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    Deemarie1223 (08-23-2012), Saysusie (08-24-2012)

  6. #4
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    Can't add much to what has been said but I did want to welcome you to WHL! We are glad to have you as a part of our family and I hope you find answers soon

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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    Deemarie1223 (08-23-2012)

  8. #5
    Join Date
    May 2012
    Northern Rockies
    Thanked 168 Times in 95 Posts


    Darla, welcome to WHL! Many of us here can sympathize with the roller coaster of diagnosis. After a years' worth of pretty intensive diagnostics involving a bunch of flummoxed doctors and more medical tests than I care to recall, everyone shrugged, declared it some sort of autoimmune connective tissue disease, and gave me Plaquenil and some NSAIDs.

    "It'll declare itself eventually, or you have your own unique disease." That's doctors trying to be reassuring.

    I am sorry you've had such struggles with this, but I am so happy you've joined us. This place is fantastic for support, and it has helped me a lot. Definitely keep us updated as you continue through the diagnostic process. I hope this next rheumatologist is worth his or her salt!

  9. The Following User Says Thank You to Derrie For This Useful Post:

    Deemarie1223 (08-23-2012)

  10. #6
    Join Date
    Nov 2008
    hervey bay queensland australia
    Thanked 209 Times in 178 Posts


    hello darla i can sympathise with your fertily problems i had 5 miscarriages i stillbirth i was 20 weeks pregnant. i have 3 children all premature births last one my daughter who is 16 she was born 9 weeks early my eldest 4 weeks and my second 6 weeks early . i am so greatful for my children but that does not mean i do not still mourn my other children. september 11 1996 was when my still born son came into this world and every year it is a difficult time for me. i was only diagnosed 5 years ago knew nothing about lupus or that it was the reason i lost my children. this takes a lot away from us . some things we can adjust to and others we cannot. but we are all here for one another in our and badtimes. i hope your rheumi is wonderful for you and gets the answers you need i was lucky i had to look around but i finally found a good one and when you trust your doctor and they listen it makes all the difference. keep a journal with all of your symptoms. and jot down all the questions you want to ask. so you are prepared. and goodluck and welcome to our whl family hugs kim

  11. The Following User Says Thank You to kim,l For This Useful Post:

    Deemarie1223 (08-23-2012)

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