View Full Version : Undiagnosed and have ALOT of unanswered questions...

02-05-2009, 04:12 AM

I have not been "officially" diagnosed with Lupus, but the dr's are "watching" me for it. :?

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 MCTD...

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 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.

At the age of 13, I developed some severe GI issues, 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, 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 trop to a urologist. it was found that I had Interstitial Cystitis when 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 voding 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 dynsfunction 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.

And then more odd symptoms started to occur, I developed hypertension, I started losing lots of weight, extreme nausea, more bowel issues, headaches, difficulty swallowing, more fatigue than usual, mouth sores, hair falling out like crazy, my circulation in my feet and hands got worse. 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 Rheum clinic to have me watched because of the ANA.

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 higehr 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 ares tiff 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 thursday, I was having surgery for my Interstitial Cystitis, an dr was looking into my records for some reason. He noticed my x-rays and noticed I 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...

So now I am really confused. I have no idea what this disease is and from what I read it doesn't cause a positive ANA, so 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.

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.

Thanks so much for listening to me ramble. :(

02-05-2009, 05:14 AM
Hello Cupcakelove,

My name is Rob, I am 41, and was diagnosed with SLE five years ago. Having read your story, I find there are many parallels to my own story. I had been dealing with all sorts of seemingly unrelated symptoms, some of them for years. One day, I noticed two patches of hair fall out on the back of my head. My barber called it Alopecia Arreata. I had welts under and on my arms, opressive fatigue, cognitive problems, photosensitivity, mouth sores, joint pain, I would literally feel like I had the worst case of the Flu just from being in the sun for 30 minutes.

I got online, looked up the Alopecia, saw the word Lupus, and the light bulb finally lit up. Like you, I also have a family history of Lupus, my 72 year old mother was diagnosed back in 1990. After going through a bunch of very unsympathetic and frankly incompetent rheumotologists, I finally saw one who was able to put together the pieces of the puzzle. I was diagnosed with SLE. I am on full disability, and live in a virtually constant state of flare that can be a real rollercoaster to deal with.

I too, knew that there was something seriously wrong with me. I knew it in my heart. Normal people don't miss a week of work for having been in the sun for half an hour. Normal people don't have trouble remembering simple words and tasks. Now, I'm not qualified to diagnose anyone, but it sure sounds like you have Lupus, and it sounds like you already meet the diagnotic criteria. Add to that your family history. Have you considered getting a new Rheumotologist? Good ones are few and far between, but often times that's the only way to get an answer. I guess it didn't occur to you rheumo that you are convinced you have Lupus because you may indeed, have Lupus. They are the (so called) experts, but these are OUR BODIES, we have to live in them every day, and we KNOW when there is something wrong. Trust yourself, trust what your body is telling you, and get a second, even a third opinion. None of us wants this lousy disease, I do not want you to have Lupus, but something is wrong and you need an answer so you can treat whatever it is that's causing all of your very real symptoms.

Welcome to our group. Please make yourself at home here. You'll find loads of good info, support, and understanding.


Angel Oliver
02-05-2009, 05:47 AM
Just to say hello and welcome and i so understand as i am too not officially diagnosed. You keep strong and so glad you found us.


02-05-2009, 06:46 AM
Welcome aboard :D . I have fibro, so don't blieve its a "trash can" disease either. Its all to real. I too believe there's more wrong. That the fibro is secondary. Unfortunately I feel I will never know. Doc just said some UCTD, which doesn't say much.

Good luck on your journey for answers. We are all here for support. It seems to take ones in pain to understand someone on pain.

May your pain lessen and your body feel better :D .

02-05-2009, 10:42 AM
Hi Cupcake...

Warm hug..welcome...

Regarding the test ANA….A positive ANA test by itself is not proof of lupus. And as you know there are many illnesses and conditions associated with a positive ANA..such as RH, Sjogren's, scleroderma, in as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease being one too.

With all the blood draws have they preformed subsets of the ANA test? They are sometimes used to determine the specific autommune disease. You mentioned anti-dsDNA..which usually is the one that confirms Lupus, but like all tests a negative doesn’t rule it out either. Have they performed, anti-Sm, Sjogren's sydrome antigens(SSA, SSB), Scl-70 antibodies, anti-centromere, anti-histone, and anti-RN to help determine another specific autoimmune disease?

Ankylosing spondylitis is a disease and not just of the back….some of your symptoms seems to correlate with what I found…
Early signs and symptoms of ankylosing spondylitis may include:
• Chronic pain in your lower back and hips, especially in the morning and after periods of inactivity
• Stiffness in your lower back or hip area
As your condition progresses
Your condition may change over time, with symptoms getting worse, improving or completely stopping at any point. Over time the pain and stiffness, which usually begin gradually, may progress up your spine and to other joints. You may experience inflammation and pain in these other parts of your body:
• Where your tendons and ligaments attach to bones
• Joints between your ribs and spine
• Joints in your hips, shoulders, knees and feet
• Your eyes
Symptoms of advanced stages
In advanced stages, the following signs and symptoms may develop:
• Restricted expansion of your chest
• Chronic stooping
• Stiff, inflexible spine
• Fatigue
• Loss of appetite
• Weight loss
• Eye inflammation (uveitis)
• Bowel inflammation

In answering your IC and Lupus question….my research yielded

Two diseases can co-exist with one another and not be responsible to or for the other…if that makes sense. Having Lupus makes us prone, susceptible to other conditions, diseases…

I found this article … http://www.ncbi.nlm.nih.gov/pubmed/18696074 A 20-year-old woman with systemic lupus erythematosus presented with dysuria, urinary frequency and suprapubic pain and was found to have a chronic interstitial cystitis, a chronic inflammation of the bladder wall, mostly affecting middle-aged women. Chronic interstitial cystitis is an uncommon manifestation of systemic lupus erythematosus.

And this…. http://www.urotoday.com/49/browse_categories/painful_bladder_syndrome/interstitial_cystitis_and_systemic_autoimmune_dise ases__abstract.html …... Indirect evidence, however, does support a possible autoimmune nature of interstitial cystitis, such as the strong female preponderance and the clinical association between interstitial cystitis and other known autoimmune diseases within patients and families. The strongest association occurs between interstitial cystitis and Sjögren's syndrome. Increasing evidence suggests a possible role of autoantibodies to the muscarinic M3 receptor in Sjögren's syndrome

You mentioned FMS. I’ve read there is a connection between IC and FMS…

Check this out…Interstitial Cystitis (Bladder) and Fibromyalgia Clinical evaluation of 30 patients with interstitial cystitis (IC) complicated by fibromyalgia (FM). Approximately 11% of patients with IC have a complication of FM. They feel isolated due to the lack of understanding of the disease and endure generalized intolerable pain. PubMed. Nippon Hinyokika Gakkai Zasshi. 2005 Jul;96(5):554-9. (Also see: Interstitial Cystitis) The relationship between fibromyalgia and interstitial cystitis. These data suggest that IC and fibromyalgia have significant overlap in symptomatology...Although central mechanisms have been suspected to contribute to the pathogenesis of fibromyalgia for some time, we speculate that these same types of mechanisms may be operative in IC, which has traditionally been felt to be a bladder disorder. J Psychiatr Res 1997 Jan-Feb;31(1):125-31. (Also see: Interstitial Cystitis)

Info from this link... http://sclero.org/medical/symptoms/associated/fibromyalgia/a-to-z.html#ic

and also look while there, they mention a connection with IC and scleroderma...

Hope this helps with some of your questions...and helps point you into a direction of healing...

Keep looking for your wellness....

02-05-2009, 01:53 PM
Thanks so much for the replies.

I do believe they tested me sjogrens and the test came back negative. So that's definitely out of the question. I also don't fit much of the criteria, one of the major ones is dry mouth and eyes, not one that I see myself with. Also I have family history of slcerderma...as well as RA.

I believe I had the anti-sm done and any other markers of the disease, I believe that they were ok, but who knows with the clinics(resident clinics) they seems to miss things quite OFTEN...as in I had blood work done once and my thyroid was low, yet my PCP never told me this. I found out like 4 months later when I went to the Rheumatologist. And then having the AS and not being told for...4 months.

I also DO UNDERSTAND that having a positive ANA does not mean I have Lupus, but what doesn't make sense is, why my ANA has increased over time. if nothing else was going on in my health, I don't think i'd be as worried. So now you see why i'm concerned.

I honestly think that Rheumatology is a field that is hurting for COMPENTENT physicians. I have seen the ones who are going into the field, and let's just say the one's i've seen have this GOD COMPLEX, the one where they know all and aren't willing to listen to anything but the piece of results in their hands. I don't think the are willing to look at the suffering rather than the blood. I am a person and not just a body made up of clues...

I also do not believe that EVERYONE fits in their pretty little box or criteria, there are exceptions to every rule, including medicine. it is a science and I know it isnt clear cut.

I have been told by my Rheumatologist that Interstitial cystitis no where near connected to lupus, and one cannot develop IC because of Lupus. They also tell me IC isn't auto-immune...hmmm. Why is it that Interstitial Cystitis, (itis) meaning inflammation exists. She said Lupus does not affect the bladder. They said if I have intestinal involvement then my case would scream "Lupus" more...Confusing...I don't see how Lupus decides that it CANT affect the bladder.

There has to be a way to put two and two together, fit the pieces together, because I don't know how much more ignorance I can take...

Now I know I don't have the MD in front of my name, but sometimes I feel they aren't "listening"...I know they go through years of medical school, but trust me, not everyone who graduates should...I have met sooo many "newbies" who can't even write a Rx correctly. Its sad to know at 24 that I feel this way about dr's. I hope it changes soon, because as my mom says everyday, "time stands still in this field." She says things seem no different than 20 years ago when she was fighting for her life in the undiagnosed stages of her Lupus.

I seem to be following in her footsteps, alot of my mother's SLE symptoms started as urinary issues and kidneys problems. She went into kidney failure and almost died, the dr's couldn't explain what was wrong and why 3 weeks later she suddenly got better after steroids...but her kidney involvement definitely gave it away when she was finally diagnosed. Along with her heart issues, pleursy...etc.

I think by the time she reached Dr. Wallace( a wonderful rheumatologist in Los Angeles) she was close to the brink...He pretty much saved her life.

Now I know some may think i'm thinking this is going to become my life because my mom lived it, NOT true. I was the type who rarely took notice of things, I rather ignored my health. I always said to my mom, if I have Lupus, I don't want to know because I was aware of my previous ANA issues...it wasn't until I got REALLY sick with Interstitial Cystitis, that I started to look more into the idea that I MAY in fact have Lupus.

I have heard of sooooooo many people being diagnosed with Lupus just based on ANA, and I'd like to say how is that possible, if I have a positive one PLUS more symptoms going on??

What am I missing?

As for the AS causing my symptoms, sure I believe it explains some of the joint issues I have, but ANA wise, it doesn't...

As of right now I am on Medicaid, until I am eligible for medicare next february. So I am limited in seeing rheumatologists, and this town is hurting for them...as one of you said, good rheumatologists are few and far between.

02-05-2009, 03:21 PM
Wow - you sound a lot like me! I had a strange childhood virus from which I never really recovered. By my 20s, it was severe enough that I couldn't work. I still managed to raise a family, but mostly from bed. The pain all over was excruciating. I was diagnosed with Chronic Fatigue Syndrome, Neurally Mediated Hypotension along with several others. But it never quite fit.

I've tried morphine, oxycontin, methadone, etc, mostly with disastrous results. Finally, age 45, I get diagnosed with lupus and RA. Why is it so hard to diagnose????

02-05-2009, 06:34 PM
I have not tried anything for Lupus...because I am undiagnosed...and who knows if I will ever get "labeled"

But as far as pain meds. I live in chronic pain everyday from my IC, which is often times compared to cancer pain. Unfortunately doctors are hesitant to give me pain medications because of my age and they don't want me to become addicted, which I appreciate it. I think in my situation just handing me pills is putting a "bandaid" on the issue and not helping it.

But I do take ALOT of other presrcibed medications.

such as baclofen, hydroxyzine hcl, lexapro, diazapem, zofran, anaspaz, enalapril and soem others...

I forgot to add, that I am starting to get a visible rash on my face much like the butterfly one, although its not bright, its definitely there...

02-05-2009, 06:39 PM
Hi Cupcakelove

And welcome to the board.

I'm not diagnosed as yet, but my rheumy put me on plaquenil and my family doctor has me on arthrotec75 because they are treating my symptoms.

Course I had to pinch a hissy fit in order to get the rhuemy to listen to me when I said I couldn't function the way I was. I feel much better now and have regained so much....there's still a ways to go, but it's a definate improvement.

02-06-2009, 04:56 PM
Hi cupcakelove!

Just had to tell you that i LOVE The name you picked! It makes me hungry when i see your picture! I love cake and icing! lol I always eat the icing and i give my husband the cake cuz those are our favorite parts!

Im pretty new but this forum is GREAT!

02-07-2009, 02:49 AM
Thanks :D

I have a bit of an obsession with CUPCAKES:)

except, i'm suppose to avoid them because of my interstitial cystitis, but now and then I cheat...shh don't tell anyone :?

I already feel at home, I see that I am not the only way having a hard time getting a diagnosis.

Nice to meet ya'll

02-07-2009, 06:43 AM
Thanks :D

I have a bit of an obsession with CUPCAKES:)

except, i'm suppose to avoid them because of my interstitial cystitis, but now and then I cheat...shh don't tell anyone :?

I already feel at home, I see that I am not the only way having a hard time getting a diagnosis.

Nice to meet ya'll

I'll keep your secret, but it's going to cost you. Lets say, two cupcakes a week? Any kind is fine with me! :D

02-07-2009, 04:52 PM
Cupcake!! You must be my long lost relative!! I don't have the same dx as you, but I have alot of the same symptoms. I also don't have insurance, so every doc says "get insurance and come back". Well, because of FM, CFS, DDD, and whatever else, I am uninsurable, round and round we go!! I just got my newest round of blood work back, and I wanted to scream! The note with it said that my cpr is still high, duh! But the rest looks good. Are they freaking kidding me? Are they looking at the same numbers I am? Sheesh, I tell ya, the amount of stupidity among the educated is enough to send me to the moon. So my friend, who lives near Mayo in Rochester MN took my results to HER rheumy, whom I might add, has saved her life! He said the numbers don't look good! Grrr, can you say irritated? My PCP tells me to meditate, eat fresh veggies, and lower my stress. Yea right! Meditate, hmm, let's see what my 3 year old son thinks of that! Eat fresh veggies, yea sure, and either sit on the pot for 3 days, or not go at all for 3 days, no thanks! Lower my stress, well, it's the docs causing my stress!! My family doesn't have a history of anything at all. Not a murmer, not a bump, just some allergies to very common things, or common allergies I should say. I don't think being allergic to water on the skin is common at all. What do they say about it? See an allergist. Sure, along with all the other incompetents I'm seeing. I had lots and lots of health issues as a child, and nothing ever went away completely. Now it's even worse, and noone, not one person, not one specialist, or educated person seems to give a you know what. I have stacks of med bills that I refuse to pay on the basis that the service they want me to pay for was not rendered. They treat me like dirt on their shoes, and then want me to pay them, forget it!! I wouldn't pay my hairstylist if she didn't do the job! Why should I pay a rheumy who repeats tests already done, and shoes me out the door? I know that there are no 100% tests for this stuff, but if it all adds up to me, shouldn't it to them too? Basically this rant is just saying "I hear you loud and clear! And I totally understand!" Oh, and about the hairstylist, she did a great job, cut off over 12 inches cuz it was clogging the drains and vacuums and getting in everyones food, but, my PCP says this is normal, shyaa. The Pain Clinic doc who shoed me out the door noticed a malar rash, the rheumy said it merely looked pink. I'd really like to show him what "pink" feels like. I'd like my PCP's lush, long, thick beautiful hair to fall out in her family's food and see if she thinks it is normal. No, I wouldn't really wish any of it on anyone, but the point is made. I'm working from the couch and computer chair today because it's all I can handle. It's really more than I can handle, I walk stooped over, and I hit the bathroom alot! I hold onto walls, and pray I don't fall and make it worse. I know that one or two medications can make this easier, but I can't get them. Plaquenil and Methotrexate aren't big on the black market.
Okk OK I'm done now, just trying to relate hehe. Here's hoping something in medicine gives, and we all get a break!!

02-09-2009, 05:48 PM
Hi cupcake,

My name is Phyllis, in 1996 I was diagnosed with fibromyalgia, in 1998 I was diagnosed with Interstitial Cystitis, and just last year I was diagnosed with Lupus.

My only defense with IC is diet and Dilaudid. I have never entertained the idea of narcotics, but the IC pain was absolutely unbearable. My Urologist said Dilaudid worked well against the pain, but addiction was a definite concern. I have been on Dilaudid since 1998, and have no problem with addiction. I know to be careful, and only take when absolutely necessary. I am very careful with it, but IT WORKS.

I try to manage IC with diet only. I chose not to partake in any of those disgusting treatments. I am very careful what I eat, so it is very bland, but I works pretty well. The worst thing to give up was wine. I loved my wine, but no more....now I only drink scotch.

If you would like more info on diet, let me know. As far as connection with FMS and/or lupus, I definitely believe there is a conncetion. My Urologist explained IC as a disease where the lining of the bladder had been eaten up and was now raw. Sure sounds like something that these little lupus devils might do.

take care,


02-09-2009, 07:26 PM
Hi Cupcake...

I understand your frustration, being undiagnosed, the questions and etc. The not knowing.

Whether diagnosed or not, if you exhibit symptoms as SITC said they should treat your symptoms.

I know it is important to you, just as it is to all us to receive a diagnose. A peace of mind. We can't make them give us a diagnose regardless if the criteria is met or not. The only choice we have is seek out another doctor.

Also....ANA may become positive before signs and symptoms of an autoimmune disease develop....so it may take time to tell the meaning of a positive ANA in a person who does not have symptoms.

When they did the ANA did they mention a particular type of immunofluroscence patter such as....

* Homogenous (diffuse) - associated with SLE and mixed connective tissue disease
* Speckled - associated with SLE, Sjogren’s syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
* Nucleolar - associated with scleroderma and polymyositis
* Outline pattern (peripheral) -associated with SLE

If you believe you have the malar rash, they can do a skin biopsy on your face, but I wouldn't recommend it. I don't think they do a scraping, shave but a punch out. A skin biopsy can be very important, especially when other criteria for lupus are absent.

I've had 4 skin punch outs. One on each shin, lower back and on the inside of my arm. They all filled in nicely..and have left a circular scar, ranging in darker pigment to red.

So, that maybe a route you would like to take...

Be well...hugs,