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!