I'm new here.
I though I'd share my frustrations here as I haven't been "officially" diagnosed just yet...
I am 24 years old and about a year ago my health just took a dive. My ANA stands at 1:360's right now and I have having a heck of a time getting any Rheumatologist to diagnose me...I will get into why I think I have SLE or some connective tissue disorder.
I was always the sickly child growing up, I use to get weird/extreme cases of everything. I even got a new strain of mumps when I was 10. I use to get strep throat twice a month. At 12, I had my ANA come back positive, it was 1:160's, not that high, but positive. Now I do know that positive ANA's could just mean nothing, but let me get to the point.
I have a VERY strong family history of Lupus. My mother and brother have it. Scleroderma also runs in my family, as does RA...
At the age of 13, I developed some severe GI issues, had my gall bladder taken out, found I had IBS and that definitely made my life hectic at that time.
I remembered always feeling tired and fatigued at a young age, at the age of 14, I was diagnosed with fibromyalgia. Now I know there are some skeptics out there that think fibro is a "trash can" diagnosis, but oh well. Thats their opinion. I just live with it.
Well as I got older I started having more joint pain, more nausea, low grade fevers, headaches, mouth sores, weight gain/loss, hair loss, poor circulation, vaso vegal episodes "fainting", rashes...this continued for most of my late teens and into my early twenties. But being a college student, I tried to ignore everything.
It wasn't until August of 2007, that things started to get really bad. I thought I had a UTI, I had never had one before, but remembered hearing the symptoms, well i tried to remedy the issue with drinking cranberry juice and azo...that didnt cure. I ended up going to the er because I didnt have health insurance, they said it sounded like I had UTI...well a week later my symptoms didnt improve...and my cultures never showed an infection. About 10 er visits later and then a trip to a urologist. It was found that I had Interstitial Cystitis when I underwent a hydrodistention/cystoscopy of the bladder.
After that I was never the same, my health continued to worsen. The pain became unbearable. I tried numerous treatments, switched dr's to find some more treatments for the IC. The voiding up to 35 times a day, the bladder spasms, the sleepless nights..lots to handle. I then was diagnosed with more issues as well. Pelvic floor dysfunction where the pelvic floor muscles are too tight and spastic. I also now suffer with ovarian cysts on a monthly basis as well as heavy bleeding. I have been through two clinics,t he first one wanted to remove my bladder...I ran outta that office fast. The one I am at now, is running out of options IC wise.
But as far as the Lupus symptoms go, more have developed since my late teens, more odd symptoms started to occur, I developed hypertension, I started losing lots of weight, extreme nausea, more bowel issues, headaches, difficulty swallowing, more dizziness, my legs feel like jello alow almost like they are going to collapse underneath me, more fatigue than usual, mouth sores, hair falling out like crazy, my circulation in my feet and hands got worse and I have numbness in my lower extremities. I decided to ask my primary care doctor about this. She ran a bunch of the blood work they use to diagnose you, she wasn't convinced. She said my positive ANA was the only thing that seemed abnormal and that I probably didnt have Lupus. But she decided to send me to the Rheumatology clinic to have me watched because of the ANA.
Which I think I definitely have more going on then the ANA...hellooooo
Now this was in January 2008, I had to wait until October to finally get seen by the rheumatologist. Being unisured sure is tough when your sick. Well when I got there, it seemed the dr. had already been filled in about how I was "convinced" I had lupus. I just knew something was wrong, you dont just randomly get sick like I did, especially with a bladder disease at my age...I knew it had to be connected. The family history and my ANA being higher than my moms...it says alot. and then my symptoms alone.
Well the dr. was rude, but ran a bunch of labs, they said my thyroid was a bit on the low side, but changed so that was ok. They said my Anti-Dna, SED rates, ESR and all that was ok. But my ANA was still high. She also did x-rays because she noted that my pelvis joints were stiff, Where my hips connect to my pelvis is too tight, and my legs are stiff as well. along with my lower back and hands...
She didnt really seem too concerned though, and told me that she didn't "SEE" any alarming symptoms and that I would see her back in February for a follow up. It didnt surprise me.
Well last January 39, 2009, I was having surgery for my Interstitial Cystitis, an dr was looking into my records because I have a fever and I told him I get them regularly and he shouldnt be alarmed because I MAY have Lupus. He then started going into my records and he noticed my x-rays, which he noticed had a diagnosis of Ankylosing spondylitis. He asked me if I was aware of this and I said NO!!! I was shocked to say the least and not happy at all...I had the X-rays done in October and no one has called me, and its now February...wouldn't it be nice if doctors actually cared???
So now I am really confused. I have no idea if Ankylosing Spondylitis can cause a +ANA. From what I read, nothing says anything about that. So it seems whatever else is going on is secondary as I know auto-immune diseases seem to run in packs.
So I do believe there is a connection between My interstitial cystitis and my other symptoms. I believe in my heart that I have Lupus.
I am just really desperate for answers because I have been through hoops to try and get my pain under control for my IC and NOTHING is helping, I've had 3 surgeries in the past year...countless procedures, tried numerous meds. I just want to gain some of my life back and I just know there has to be a way to get some of this pain under control.
There has to be a reason why my body wont respond...
I have had to give up so much because of this. I no longer can attend regular school because the pain is too much. I am now on disability because I can barely get out of bed from the pain of IC and my body is very fatigued.
If anyone has Interstitial Cystitis and Lupus, what are you doing to get your IC under control.
if anyone has any feedback on what I should do, please share.