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Hello to everyone!

I guess I'll start with my medical history since that is why we are here. Or at least why we start here.

I have been feeling "off" since the birth of my son 9 years ago. I was dx'd with hypothyroidism 6 months after he was born, in June of 1999. I have just been dx'd with Hashimoto's Thyroiditis this past June 2007. I have had many surgeries including the removal of my gall bladder, an ovary, my appendix, and a hysterectomy. I have had fluid around my heart since at least August of 2000, when it was found during the gall bladder ultrasound. During later ultrasounds, I was found to also have fluid around both lungs and in a CT scan, they found fluid in my abdomen. I also have some kidney stuff going on and possibly some liver stuff. I have never seen a kidney or liver doctor and didn't know I had issues with those until I became proactive in my health a couple months ago.

I requested all of my medical records (and I have quite a stack) and read through each and every page at least 3 times. No one told me something was off with my kidneys. No one told me that 2 of my heart valves have mild regurgitation. No one mentioned that my liver labs were all off. I could go on and on about this, but I believe that is enough.

I have been to see a rheumatologist in the past and was sent away because my ANA was negative. I have had a positive rheumatoid factor several times however. When I became proactive and got all my records for myself, I told my GP that I wanted to see an autoimmune specialist, but not the one I'd seen before. It took me 2 months to get in to see this guy, but I think it may have been worth it. At least I hope it will.

I saw him a week ago and will be going back to see him next week. He spent an hour with me and told me he believed I had lupus. And fibromyalgia. And something autoimmune in my intestines (based on biopsy from earlier colonoscopy). And psoriasis. He also talked to me about Undifferentiated Connective Tissue Disease. Wow. He did a ton of lab tests on me and called me today to let me know that they were ALL negative:( I guess I'm not 100% sure if I should be happy or not yet. He told me that he would be treating me as UCTD. Last week he said that he would be putting me on Plaquenil if I was postive for lupus or if I remained UCTD, so I guess I'm happy that something is going to be done about how I'm feeling. He did put my on cyclobenzaprine for my fibromyalgia, but as of yet, it's not doing a thing. Still hurt and still don't sleep well, but it's only been a week. I'll let him know about it next week when I see him again.

What I'm mostly confused about is why all my autoimmune labs are coming out negative when I have one autoimmune disease (Hashimoto's) and possibly 2 if it is psoriasis. NOt to mention the autoimmune something that is going on in my intestines. I guess I will have to be happy that something is being done. And if UCTD is autoimmune, why are the tests negative?

Don't get me wrong, I am glad he named something and will treat me for it, I just have to get over myself and accept that UCTD actually IS a disease and not just a dismissal.

Based on what little I've read on this board so far, it seems that UCTD and Fibro = lupus without the positive tests. I must say that if someone asks me what's wrong, it sure seems easier to say lupus than Undifferentiated Connective Tissue Disease and Fibromyalgia and then have to explain what UCTD is.

Well, that "hello" was pretty lengthy wasn't it? Sorry about that. I'm just really confused right now and don't know what to think or how to react. I suppose I'm technically without a dx right now since I haven't seen him for the dx yet. He did say it on the phone though. This is really a very abbreviated version of my health history too!

Jenny
 

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Hi Jenny & :welcome: ,

I am Pam from the UK & diagnosed with Lupus in June 2006. We all started out as newbies here and I don't think anyone has had a short story yet :lol: . This is a fantastic friendly site with a wealth of information for those diagnosed and also those that aren't.

What a journey you've been on. I'm so glad you pushed to see a new doctor. I can't answer all your questions but I'm sure someone will come along that can.

Just wanted to say hi and hope to get to know you.

Hugz,

Pam xxx
 

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Welcome to the forum Jen :)

Congratulations on taking charge of your health - it seems you have had less than careful treatment in the past. It sounds as if you may well be on the way to getting answers and the right treatment. There is an overwhelming amount of information to be absorbed at first and I hope you will find this forum an excellent place to get what I call predigested information to guide you through the maze.

Although this is a connective tissue disease forum for diseases in the same group as lupus, many people here have additional autoimmune diseases of other sorts and can probably comment better than me on those. Hashimoto's thyroiditis is one that's fairly common along with lupus; a few people also have psoriasis which is regarded as autoimmune. I don't know much about the role of the presence of auto antibodies in the diagnosis of those two.

Fibromyalgia is not regarded as autoimmune and auto antibodies are not significant for diagnosis The only test for fibro is pressure points: a certain amount of pressure is applied to various points about the body and if enough pain is felt at enough of them, this along with symptoms and clinical judgment leads to diagnosis.
It is said that about one third of those with lupus also have fibro.

The term UCTD properly refers to an autoimmune connective tissue disease that has all the features often typical of lupus, but doesn't have any specific lupus features. Nor does it have any specific features of the other CTDs that have lupus like symptoms.
There are only 4 specific features in lupus, meaning, if found along with other symptoms they would confirm a lupus diagnosis. But not everybody with lupus has any of these features.
They are two antibodies, anti ds DNA and anti Sm ( for 'Smith'), lupus skin problems proven by biopsy if need be and kidney problems proven by biopsy.
The antibody most often associated with lupus is the ANA test. 95%+ of those diagnosed with lupus have these antibodies. But you need to know what is meant by 'the lupus test' because there is no one test for lupus.

Having a positive ANA does not mean you have lupus, because many diseases can show a positive ANA at low titres including Hashimotos.
The ANA is not specific but its presence makes lupus more likely and its absence makes lupus or very similar less likely. The higher the titre the more likely it is that lupus or very similar is responsible.
There a few other antibodies that can lend weight to the diagnosis of lupus and similar. Sometimes these aren't done if the ANA is negative but if an autoimmune CTD seems most likely then they will usually be done.

All the usual tests are listed on the Information section of this site in the artcles about diagnosis and tests. It's an excellent idea to ask or find out the names of the tests and get copies of the results. That is essential for people who want to understand their disease. It isn't hard to learn what they are and their possible significance

A UCTD diagnosis would not usually be given if the ANA was negative.
I am sure that many people with an SLE diagnosis might have got a UCTD diagnosis from another doctor if they have no lupus specifics: so much depends on the doctor's diagnosing habits and preferences.

I can't see any mention of any of the features typically associated with CTD's like arthritis so check out the ACR Criteria list which gives a good description of the sorts of symptoms and also the Alternative Criteria list which mentions health features very often found in people who have lupus as an aid to diagnosis.

The autoimmune gastric disease mentioned might be celiac disease which is gluten intolerance. Some people have it as well as lupus. There are associated auto antibodies I think but again I dont know what role they play in diagnosis. This disease has some symptoms that can be found in lupus, as does Hashimotos. Treatment consists of a diet that excludes gluten which means all cereal except rice, and in some cases oats, ( as far as I know )

I suppose the psoriasis diagnosis is reliable? If there is the slightest doubt that it is psoriasis it would be worth having a second opinion. There is a form of lupus skin that can resemble psoriasis ( subacute cutaneous psoriasiform) This is usually highly photosensitive. Treatments often used for psoriasis involving UV therapy would be very harmful for lupus skin. Psoriasis can have arthritis symptoms too.

I think I would like to know exactly why my doctor thinks I have UCTD/lupus whatever you want to call it, when there is apparently no supporting evidence in any sort of blood work.
It is possible but very unusual indeed. I might decide that I want a second opinion.
Plaquenil is a very benign drug and it is sometimes used to help diagnosis, because if the patient improves on it then that suggests it truly is a CTD. But it takes several months to be fully effective No point in taking anything unnecessarily and perhaps taking longer to be correctly diagnosed if the Plaquenil doesn't seem to be effective

As for what you tell people, most of us only tell people who need to know and those who are interested enough to want to gain an understanding. For other people just say you have a disease "a bit like rheumatoid arthritis " or something people can easily understand.
Bear in mind that an SLE diagnosis has serious implications for insurances.

Keep in touch and ask for any further information or clarification we'll do all we can to help you. You have a great deal to cope with. Take it step by step and however much there is to do make sure you fit in time for rest, relaxation and re- creation.

Bye for now
Clare
 

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It is really amazing (& sad) how little our doctors choose to communicate to us sometimes. I started getting copies of all blood tests and all visit notes a few years ago myself and that was how I found out about my 2nd leaky heart valve (only had been told about the 1st - mitral valve before that). I also only then found out that my ejection fraction is below where it should be - especially for someone in their early 30's (at the time my last echocardiogram was done...) So I can definitely related to what you've been through.

You may want to find out exactly what your kidney problems were - was it protein in the urine? Blood? How much? Trace amounts of these is usually not considered a problem... low GFR is a problem if it stays on a downward trend...

Your intestinal biopsies could have been either pointing to Celiac, or Ulcerative Colitis, or Crohn's. Lupus itself can also cause things like vasculitis which can affect the intestines as well - so you may want to ask for a more detailed explanation of what that was as the treatments are very different. I assume you've had some troubling GI symptoms as well...

As for the rash - have you ever had a biopsy done on it? A biopsy has been the only way some people on this forum were able to get an official/positive diagnosis for lupus. There are very specific biopsy results on both affected and unaffected skin if it is due to lupus.

It is rare to be diagnosed with SLE with completely normal bloodwork. However, if there are enough signs and symptoms, and other supporting evidence like biopsy results of skin or kidney, then a diagnosis of SLE is obviously warranted and treatment should begin immediately.

It sounds to me like this is a very good doctor indeed, and hopefully you gave him all the past test results that have showed abnormalities. It is promising that he is trying out Plaquenil to see if it produces an improvement and is keeping an open mind.

With respect to fibro... there are many other treatments out there for it. Amitriptyline, nortriptyline are the older cheaper drugs which help with sleep and reduce pain levels. Lyrica is newer/expensive but FDA approved to treat fibro. Cymbalta has had some success as well. So there are many others to try out there and hopefully one of these will help soon.

Good luck - I hope the Plaquenil helps and you find a med that works for the fibro soon too!
 

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Hi Jen and welcome:wavey:

Clare and Maia have given you a great wealth of info, so I just wanted to say hello!

I myself was finally diagnosed with the aid of a positive skin biopsy, the rashes I was getting covered my entire face and trunk. Of course, I was still hitting the beach twice a week since I didnt know i had lupus!! I do miss the beach, but much healthier now!

Good luck!
Sharon
 

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Dear Jen, my Bloods were negative for a long time.It was obvious I was ill so I had actually started treatment and been admitted to Hospital before my bloods became positive. It can take time.

St. Thomas's Hosp. treats quite a few patients with negative bloods and I know that Liverpool does too.

x Lola
 
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