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undiagnosed and frustrated...

516 Views 6 Replies 6 Participants Last post by  onetay
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 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.
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frustrating and unhelpful

Hello and welcome. What a lot going on! I am new to this myself so haven't got a lot of experience but I just wanted to ask where you are from to see if anybody on the board can recommend a lupus knowledgeable rheumatologist close to you. You really need somebody to view you in a holistic way and try and give you some answers, it is common knowledge that Lupus can often be missed or explained away for many years which is detrimental to your health both mental and physical... it is soooo frustrating when you fail to be diagnosed.

Do not give up on getting a decisive diagnosis, certainly alot of your symptoms are familiar to Lupus patients but you need to be dealing with a health professional who is knowledgeable and approachable, it is no good being left to 'wait and see' after all of these years, it is difficult to be determined and forthright when you are tired and poorly but you really have to invest some energy into getting a decent consultation.... nag nag nag!!!

I hope others can help with your questions and I wish you well, take care of yourself, look after yourself... until the next time.

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Can you get to see someone fairly quickly about the ankylosing spondylitis? Preferably a rheumie with a special interest in this. I ask, because that can cause some of the pelvic floor, bladder and bowel problems as it can lead to a cauda equina syndrome. If this is happening, then it needs treating and dealing with NOW before it gets to the point where you lose bladder and bowel control even more. Having a specialist doc separate out what symptoms are coming from AS and what aren't will help you get anything else sorted out better too. Your "fibromyalgia" may also be explained by AS, as there is often enthesitis (inflammation of cartilage) with AS, and that just happens to be the location of a lot of the fibro tender points. Also the age of onset of symptoms is consistent with AS (teenage years).

ANA isn't usually positive in ankylosing spondylitis (even though AS is an autoimmune disorder), so if you have a positive ANA then you could well have an overlap syndrome, or more than one autoimmune thing going on.
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I really feel for you, what an absoukutely nightmare you have been through.

I do not know much particularly about Ankylosing spondilitis but I have read a lot about the different blood tests and things and was sure that I had seen that it was not connected to a positive ANA.

I found this site which gives more info on tests and procedures used to diagnose and signs and symptoms.

The other thing that I know is that AS is ususally an inherited condition attached to a particular gene. This is in the link too.

Are you absolutely sure that the doc read right, thats the other thing that occurred to me.

I was diagnosed with spondilitis of the neck at my first rheumy appt but this is connected to the arthritis part of my illness and not of autoimmune origin.

I really hope you get this figured out soon and I'm really sorry for everything you've been through.

Take Care

Good Luck

Cassie :)
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Welcome to the board.

You sure have a lot going on. I am pretty new to all of this myself but I think you should get to a good Rheumy doctor and it does sound like you may have more then one thing going on with a positive ANA.

I am sorry your dealing with so much. My girlfriend has AS and it can cause it's own set of problems. A good link has been provide to you with great information.

I hope you can get the help you need and deserve. Let us know how you get along.
Thank you for the replies.:)

I am from Oklahoma, which is not a GOOD thing. All the rheumies here are not the greatest...and that was told to me by my physical therapist.

I am pretty sure that the Dr. who told me about my x-rays was right. He called it Ankylosing Spondynitis. He even described it to me...he pointed to the lower back and was micmking being slumped over etc etc. and when I went online to read about it I had no idea what I was lookin for because I could barely say it, so I googled spondynitis and back...sure enough everything he described was that. And it was right what he said after I learned how to say it LOL.

I go to my follow up at my Rheum February 26, so we shall see what she reccommends.

As for the AS causing my Interstitial Cystitis, I can see how it can affect my lower back, but the pain from my IC is definitely coming from my bladder, because i get horrid spasms, shooting and sometimes stabbing pains in my bladder walls...pain so bad I curl up in a ball and can barely move.

But i'm sure the tightness of my pelvis does not help things either, and my posture as well.

The pain from my IC has become so debilitating I can barely get out of bed most days...along with whatever else is going on.

But i'm sure the tightness of my pelvis does not help things either, and my posture as well.

But as one of you said, a positive ANA does not account for anything I have been diagnosed with thus far. So I will have to just keep waiting...until my rheumies decide I sick enough to be treated with whatever is going on in my sickly body...:(

I can definitely say it is quite difficult to be thrown all of this at 24 years old...I just keep thinking...No more diagnoses...but they seem to keep coming.

Thanks again for the support:)
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It sounds like you are in great need of some answers. I can not believe that you were not told about your xrays. I have always advised people to take control of their medical care and to always follow up on all tests, labs, doctor visits, and keep on the doctors for answers. I am advising you of the same as we are the ones living with the pain and diseases. I would also advise you to see either the doctor of you mother or/and brother for a second opinion on the things going on with you. You must also open your mind that it is not lupus and could be something else going on with you. I am not doctor so can not say whether you have or do not have lupus. It is wonderful that you keep seeking an answer to all the things going on with you as it is very important for ones mind to know they are not crazy so to speak.

I am sorry it seems that you have been looking for answer for a long time. I feel so bad for you. You are right it is very hard when you have no insurance to help you. If you need to talk we are here.
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