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Discussion Starter · #1 ·
Where should I start? How about the beginning. As a child, I've always known that I wasn't "normal". I was dx with psoriasis at 9 years old and have been battling it for most of my life. Around the age of 12, I started to get intense pain in my knees. The R-I-C-E technique helped me for a few years. Then when I was 15, the knee pain got worse. I started to see doctor after doctor and finally a physical therapist dx me with petellafemoral syndrome. He warned me that if I didn't slow down my physical activity, I could develop chondramalcia and will be in a wheel chair by the time that I'm 30.

Also, at the age of 15, I had an abnormal urinalysis, which indicated that I had some protein and crystallized calcium deposits. In addition, I started to get chest pains, which were dx as intercostal chondritis and pluersy. Also, at this age, my memory started to fade and my honor roll grades started to fall. I started to sleep at least ten hours a day and still felt tired through out the day.

By the time I was 18, I got my first of several kidney stones and walking became more difficult. In addition, I had mono twice and almost failed out of college! More interesting symptoms included: extremely dry lips, mouth, prone to bv, dry skin, extreme fatigued, more hair loss than before, and a red rash across my face.


Fast forward a little bit, last October, my health took a turn for the worse. I developed joint pain in almost all of my joints. The number of times where I could barely walk increased, my hips and ankles hurt, my fingers were so sore that lifting a piece of paper was dreadful, my elbows hurt so bad that lifting anything was excruciating. It was three weeks, before I decided to see my primary doctor. I told him about the pain, my other symptoms, and my family history of lupus and rheumatoid arthritis. He ran some tests and the results came back borderline. My ana was slightly elevated and my arthritis sed rate was elevated. He told me to follow up with a rheumatologist due to the arthritis.


Here's when the frustration mounted more than ever! I saw the rheumatologist, whom had a terrible bedside manner, and his conclusion was that I didn't have arthritis, that I had sjogerns, and fibromyalgia. I really felt that those dx didn't fit the whole picture. I followed up with my primary and he agreed then sent me to a new rheumatologist. This new rheumatologist said the same thing but said that I was undoubtedly borderline for lupus. He said that if I did have lupus, that it's not effecting my organs too severely.


In addition, I saw two dermatologists about the rash on my face. The first doctor said that is was rosacea. At the time of the appointment, my rash wasn't fully developed, so a couple of months ago, I decided to get a second opinion. The second person was the np for the dermatologist. At first glance, he thought it was rosacea, but he looked at it closer and traced the shape. He then asked me about my family history of skin and other medical diseases. I told him about my father having lupus. This struck a chord with him and said that it looks like it's both rosacea and lupus. He wants me to follow up with the dermatologist to confirm, but I haven't been feeling well enough to go back.


At this point, I was basically at square one. The joint pain persisted everyday for about 8 months. It was since subsided, but I still had days where it flares up. My knees still ache daily and walking long distances is still very difficult. I'm still too stubborn to get a cane or use a wheelchair at the stores. I work in retail, so I'm constantly on my feet. I want to get a sit down job, but financially, I can't afford it yet.


In July, I was shocked by another symptom. At first I thought it was a kidney stone or another ovarian cyst. I went to the gyno and the urologist. I was having some blood and protein in my urine, but no stone could be found on the x-ray. Also, I started to note that my breasts became tender two weeks prior to my monthly and my monthly cramps were worse. In addition, I noticed that the pain seemed to be triggered during ovulation and last through my monthly. The pain was a sharp deep feeling that came and went. The gyno thinks that, I have endometriosis. I have a laparascopy next week to confirm it.


Sorry about the rambling, but I felt that it's important to divulge my complete medical history to understand what I'm dealing with.

Does anyone else have similar symptoms or thoughts. I'm to the point that I don't care what it is that I have. I just want to lead a more normal life! Thanks :)
 

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Hi forever hopeful and welcome :welcome:

I'm sorry you have so much to deal with and that you health problems have escalated.

Some of you problems could indeed be Lupus related but they could also be indicative of Sjogrens and Fibromyalgia and a few other unrelated things going on. They could also be something to do with another rheumatic disease called Psoriatic Arthritis. I'm just throwing those things out there from what you have written, I'm no doctor.

I think the first thing you need to do if you want answers is to follow up and have that second appt with the Dermatologist, they may do a skin biopsy and that could confirm Lupus. However if it is negative then that doesn't neccessarily mean you don't have Lupus which is where this gets tricky.

I think depending on that you need a referral and continue to have follow ups with a Rheumatologist who specialises in treating connective tissue diseases to have a more thorough assessment and ongoing monitoring. Unfortunately not all Rheumatologists are CTD specialists. You may like to post on our find a doctor forum to see if anyone here sees someone who is local to you.

Lupus and some of the other connective tissue diseases can be difficult to diagnose and can take time. But by seeing someone who is really adept in their field and someone who you can communicate well with at least you will know you are getting thorough assessment to either rule it out or in given time.

Did either of the Rheumatologists you saw prescribe anything for the Sjogren's and Fibro diagnosis they gave you? Usually things like Plaquenil for the Sjogren's and a low dose antidepressant for the Fibro (to enable a good quality of sleep) are prescribed as first line treatments?

Do you know what other tests were run besides the ANA to determine the Sjogren's diagnosis? Do you know what your ANA reading was and the staining pattern? All these things are important to know to see if you have a thorough assessment and to narrow down the field of what could possibly be going on.

On the tests and procedures forum posted at the top you will find information about blood tests used to help diagnose Lupus, it's a good idea to familiarise yourself with them. Also posted at the top of this forum are criteria used to help diagnose Lupus, they don't have to be present all at the same time (they can form part of your medical history) mind you, but there does need to be no other reasons for their presence.

Good luck with your Laproscopy and if you need any further insight we will try and help.

love
Lily
 

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Discussion Starter · #3 ·
Well, my first ANA was 1:40 then it went to 1:80 about a month later. The shape was homogeneous with cytoplasmic florescence. I know most SLE is speckled. My RF factor was a 28. As for the sjogerns, the rheumatologist just did an observational test. I was drinking a lot of water at the appointment, so he asked me several questions-all of which I answered yes. After the research that I've done on it, I think the sjogerns fits me pretty well. However, it still doesn't answer everything. As for the fibromyalgia, I do not have any of the main symptoms. I only have some of the other symptoms that are associated with both fibromyalgia and other diseases. My primary care physician thought that it could be psoriatic arthritis, but the rheumatologists and dermatologists didn't even mention it. Again thanks for any advice anyone may have.
 

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Hi forever hopeful,

Actually speckled is quite a common pattern in Sjogrens, but can be found in SLE, there are no hard and fast rules about the staining patterns, they are just a guide when considered along with symptoms.

Do you know if he ran an Anti-DsDNA test?

A homogenous pattern is common in drug induced lupus at lower titres, were you on any medications at the time of this result? It has also been reported in SLE though, so again no hard and fast rules.

Did he test you for the pressure points related to fibro?

Did he run the ENA series of tests?

Your Rheumatoid Factor would be considered normal in my country but labs differ, do you know what the normal range was for the lab?

You don't mention if any meds were prescribed, that can be helpful information as far as how you responded too.

Sorry for all the questions, it will assist though in seeing if you had thorough investigation.

love
Lily
 

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Discussion Starter · #5 ·
Hey Lily,
I don't mind the questions. As far as I know, they never did an Anti-DSNA. Yes, I was on some medication. I was taking vicodin, aleve, and clobex (maybe more, but I don't remember). What's the ENA testing? The normal ranges for the RF is 20 or below according to my lab results. Both rheumatologists did the pressure test. I felt some pressure--not pain. However, the days of the tests, I just unloaded a truck full of heavy totes for work--so my muscles were a little sore from that. In addition, my joints were very tender--and the RF factor explains it. So the fibro test was very inaccurate. However, they tried me on lyrica--which made me feel like I was drunk. I couldn't think strait, walked crooked, blacked out a couple of times, slurred all of my words, and was very dizzy. Then they tried me on cymbalta and I had a similar experience but less intense. Also, the vicodin and aleve did nothing for my joint pain.
 

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Hi forever,

I thought I'd answered your queries but must have overlooked them :blush:

The ENA stands for extractable nuclear antigens and comprises 7 tests under the one banner. It's used when the ANA is positive to try and pin down which disease you may have.

The 7 tests are as follows:



Performed when ANA is positive to detirmine ANA specificities, some of which identify categories of disease with implication important for prognosis and treatment. Also indicated when there is a hgih clinical suspicion of connective tissue disease with negative ANA e.g. antibodies Ro (SSA) and (Jo-1).
Application defined antigen specificities include:

  • RNP - mixed connective tissue disease
  • Sm - highly specific for SLE
  • Ro (SSA) - associated with SLE, Sjogrens
  • La (SSB) - Sjogrens syndrome
  • scl-70 - scleroderma
  • Jo-1 - polymyositis
  • Pm-scl - scleroderma/polymositis overlap
http://www.rcpamanual.edu.au/sections/pathologytest.asp?s=33&i=835

If the Rheumies you saw were Lupus specialists then they would have run these tests and also the DsDNA (very indicative of SLE) and also complement tests (usually C3 & C4), along with Lupus anticoagulant and Anti-Cardiolipin. I think if you can establish that these weren't run then it's worth tracking down a Rheumy who is more familiar with Lupus just to make sure you have a thorough assessment. I would also keep the appt with the Dermatologist who saw you before.

That's the best way to get answers to track down good docs and to stick with them so they can follow your disease and narrow down which it is you have.

I would also take pics of any rashes you have crop up (sometimes they hide just when we need them to be there for the doc to see). I would also advise getting copies of all the bloodwork you had done to see why they decided it was Sjogren's and Fibro. It's possible that you had the Sjogren's antibody show up on an ENA test which led them to that conclusion. Some of your symptoms certainly fit the profile, but without running a lot of tests besides the ANA they would not be able to determine that.

love
Lily
 

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Discussion Starter · #7 ·
Do you know if those tests are run in the states? It seems like if they run that panel, they could figure out what's causing my symptoms. I've already started to keep my lab records. I just really wish that I did it sooner. My other lab work and tests are back in Illinois, which is over a thousand miles away! To add insult to injury, I think they only keep them on file for three years, which means they are already destroyed. So, I'm kind of starting from scratch! I go see my rheumatologist on Monday, so I'll talk with him about running another set of panels. One thing that is starting to scare me is that if I do get a diagnosis, that my insurance will change. That's one of the downsides about living in the states! I don't know how your insurance works in Australia, but here, if you have a pre-existing condition, such as lupus, they can either raise your rates or drop you. If you try to get new insurance with a pre-existing condition, it's usually very expensive. But on the other hand, who really wants to live like this?
 

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Hello forever
Those tests are most definitely run in the USA, the only problem there is that they might not be done if the ANA is negative or sometimes only very low. However if there is a lot of evidence that lupus is a possibility they should be run whatever the ANA.
http://www.uklupus.co.uk/tests.html

If that cytoplasmic fluorescence is still present that could be significant. Lupus arthritis is not always evident with swelling and redness or any signs of damage on X rays. When it's a question of pains it might be more correctly called arthralgia. I guess your doctors meant you don't have RA, rheumatoid arthritis.

It is possible to have rosacea and lupus together and there's also a form of rosacea called lupoid rosacea. Apart from the malar rash sparing the nasal labial folds, another way of distinguishing is trying rosacea treatment. If it is lupus it won't clear up.

It is true that an SLE diagnosis means health insurance problems in the USA.
It means problems for other insurances pretty well everywhere. Soem doctors understand the problem and might diagnose a vague "connective tissue disease" or Undifferentiated Connective Tissue Disease, UCTD especially if there is no organ involvement.
I am sorry you are so unwell

Many hugs
Clare
 

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Hi Forever,

The tests Lily listed are done in the US. Since everything is on computer now you may still be able to get your old records.

Insurance can definitely be a problem once you are diagnosed. Initially my rheumy did not enter the diagnosis in my chart. Instead he contacted my internist and let him know the diagnosis. I was fortunate since I was on my husband's insurance through work. The premium's could not be changed.

Good luck with your appointment on Monday.

Take care,
Lazylegs
 
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