View Full Version : Hi, new to everything! 10yrs and still no dx!

08-22-2012, 11:49 AM
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!

08-22-2012, 01:35 PM
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.

08-22-2012, 07:14 PM
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.

08-22-2012, 07:21 PM
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

08-22-2012, 08:03 PM
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!

08-23-2012, 12:53 AM
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

08-23-2012, 06:14 AM
Thanks for all the warm welcomes! Its good to know I'm not alone. As far as anti depressents, they have me on one and also an anxiety med. I'm also supposed to be starting neurontin for the neuropathy but I've been putting it off (mainly cuz I'm scared) but I ve heard it will bring me great relief. I take nsaids now and that's it. I'm pretty sure I should be on at least a baby asprin (with 3 blood clotting disorders, why am I not?) That's another thing I need to ask about.

And kim, thank you for sharing about your losses, that's another area where I feel totally isolated. Not many people experience so many losses. My son who lived for 6 hrs bday is sept 9th, there bdays are close :) my 2 stillbirths (a girl july 20 and another boy aug 3rd) so these past 3 months are always so hard for me emotionally. My son who's 13 was born 15 days early and even he had placental issues (a piece about the size of a thumb had started to break away) so if he didn't come when he did, I might have lost him too...I was told by a kidney specialist to terminate at 24wks cuz I have severe protenoria (10 times! The normal amnt in my urine!) Thank God I didn't listen to him, as my son was my only child until 2 yrs ago, when after being told I couldn't get pregnant anymore, I did! after a long hard pregnancy and they, took her by csection 4wks and one day early on purpose, I now have a beautiful 2yr old girl! I'm also blessed to be extremely close to my step daughter (who calls me her other mother, not step mother) she was my daughter long before I had a bio daughter) she's 10.

Again, thank you all for the warm welcomes. I will keep you updated as I learn more. I'm just praying my blood tests match my symtpoms finally!

Ill eventually write more about me in the "about me" section, but this is me and my stpry for the most part:)

08-23-2012, 08:02 AM
Welcome, though I am really sorry you have to be here.

A few things strike me about your story - I am no doctor, and my Lupus diagnosis is relatively new (about a year), though like most people I suffered for a long time before the diagnosis. From what I have learned, here are a few suggestions and practical things to discuss with your new doctors -

First, go back through your post here, and make it into a list of bullet points in chronological order (or as close to that as you can - I am horrible with memory/dates, so I understand how that goes!). Try to be concise, but include everything. What the symptoms are, when they started, when they ended (or if they continue to this day), severity (i.e., how much they do or do not interfere with your life), etc. Have a printed copy ready for your doctor, or if possible, send it in before your appointment. Sort of a one-page history of your issues, from your perspective. Don't try to self-diagnose (as you probably know, doctors hate that!), but do report all your symptoms, and ask about any diagnoses/diseases/syndromes you are worried about.

The reason I say to write it and print it out is that once you are in the doctor's office - as you probably already know - it's tough to recall everything and communicate it all - but all that information is important. Also have any previous lab reports copied and sent in BEFORE your visit. Call to make sure they are there.

Second, I'd say to definitely pursue the antiphospholipid antibody stuff. I have APS as well, and though I have had very few symptoms (blood clot in my eye), my docs take it very seriously and I am on a daily aspirin (325mg) and fish oil to thin my blood. They monitor my blood pretty closely, and we are hoping the aspirin and fish oil do the trick, because being on warfarin or coumadin or whatever is a real pain the rump. Lots of people test positive for APS and never have serious problems their whole lives, but it can turn ugly quickly and I'd say it's worth finding a doc who is knowledgeable about it, takes it seriously, and monitors it closely just to be sure. sometimes that's a Rheum and sometimes it's a Hemotologist.

Third, have you done any research on Sjogren's Syndrome? When you describe the dryness, it makes me thing Sjogren's (again, I am not a doctor!) - another "fun" disease I seem to have developed. These things seem to run in packs, so it would not be unusual for you to have several things going on at once. it would be worth asking about, and there are some blood tests they can do, though like with any of these things, negative blood tests do not necessarily mean you don't have something - agh, it's all so complicated!!!!!

Keep pursuing it, though...even if their tests come back with nothing, repeat that you are NOT FEELING WELL and ask what doctor should you see next, and be adamant that you are not willing to go on without some relief.

Again - I'm sorry you're going through all this, and I hope you can find help, information, and support here. Welcome!

08-24-2012, 08:51 AM
Hello and welcome to our family. You have already met some of our members and seen how understanding and informative they are.
I am sorry to hear that you've been through so much. There are quite a few of us here who have suffered through miscarriages etc. due to our Lupus. Also, unfortunately, there are those of us here who have also suffered the loss of our children due to this disease. So, you are definitely amongst people who truly understand.
Please let us know how your appointment with the rheumatologist goes. In the meantime, we are here to help you as much as we can and to make sure that you know that you are not alone.

Peace and Blessings