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03-25-2009, 09:56 AM
Not too certain how this website works just yet....but I catch on quickly. Like so many other I struggle with being diagnosed. Currently my rhuemy told me I fall under the "Auto Immune Umbrella", said I have Undefined Connective Tissue Disease with unlying Reynauld's, he also said I display many symptoms of lupus but without the bloodwork to confirm he doesn't want to commit to that.
Everyday is a struggle almost. I have two children...3 year old daughter and 10 month old son. Plus, to make it that much more difficult for myself we decided to get pregnant again. My husband is incredible and is consistantly picking up my slack, which ofcourse makes me feel guilty. This nameless, invisible disease robs my children. I don't get them out as often as I'd like. I'm not as happy as I want to be. Some days I won't even move off the couch in fear of literally breaking. I'm being robbed of what precious time they have as babies and children. I feel like I'm sitting in a theatre watching them grow before my eyes with minimal perticipation.
Anyway, I'm Melynie. Fighting my way towards somehing. Fantasies of achieving some sort of definavtive diagnosis, which really won't help me anyway. I'm here looking to vent and meet some friends.
03-25-2009, 11:39 AM
Hello and welcome and you've come to the right place.I send you gentle hugs and so hope you get a firm diagnosis very soon.A lot of us here have had various diagnosis then to be changed, for example me, I was told i have Lupus before the blood results.Then to be told i dont have Lupus its M.E/Chronic fatigue syndrome. I unfortunately have not got good caring Doctors, but ego arrogant ones instead.
You will like it here and we will all try and help you through this.We have our own arcade if you want games.Ask any questions and they hopefully will be answered.I am in the UK, but many of the members here are from the US. Hope to catch up with you soon. You will make many friends here and begin to feel good about life again...no matter what life brings.We will help you!
P.S Congratulations on your pregnancy.....so exciting...baby number 3...wow! How amazing are you!! xx
03-25-2009, 01:35 PM
Welcome and congrats on new coming baby.
Rest is what you need, with your young children I know
its hard. My 5 kids are older now but when they were younger
it sounds like you and I were going through same situation.
Keep your chin up and get lots of hugs!
03-25-2009, 04:15 PM
looking for a place to vent and to make incredibly knowledgeable and compassionate friends...you have found the perfect place.
i am sure other young mothers will be along very soon to share feelings with you, my wish would be for none of you to have to endure lupus.
welcome, enjoy, and learn,
sick n tired
03-26-2009, 09:44 AM
Gentle hugs....I know the guilt one can feel when they aren't doing enough for their kids...I have had that many times especially before I was diagnosed and it was "all in my head" What I mean is before I even knew I had an autoimmune condition.
I am trying not to feel that was, but even though my youngest of 10 is 13 I don't succeed. Just feel free to come here and talk because you are going to find many here who will understand.....Oh Btw...Welcome to this forum!!!
03-26-2009, 11:49 AM
Welcome to our family :laugh: Many of us have been (or still are) in the diagnosis merry-go-round, waiting for a definitive diagnoses.
Undifferentiated Connective Tissue Disease is a condition which affects body organs and muscles in a many ways (systemic), however, the disease has not developed to the stage where physicians can easily pinpoint to any one specific disease. Often, over time, symptoms will progress and lab work will confirm one disease and/or several co-existing diseases (known as Mixed Connective Tissue Disease).
As you mentioned, your lab work has not, as of yet, confirmed any specific disease. But your symptoms are those of a multi-system connective tissue disease. You are not alone, there are many here who are in the same place as you.
Connective tissue diseases are a special group of rheumatic diseases (diseases that feature abnormalities of the muscles and/or joints) that can be associated with arthritis and/or arthritic pain. The cause or causes for the connective tissue diseases is (are) unknown. They all feature the characteristic of spontaneous overactivity of the body's immune (defense) system. This overactivity results in the production of unusual antibodies that are found in the blood. The antibodies can cause other problems in patients with connective tissues diseases.
The connective tissues are the structural portions of our body that essentially hold the cells of the body together. The classic connective-tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis. When these conditions have not developed the classic features of a particular disease, doctors will often refer to the condition as "undifferentiated connective tissue disease" or UCTD. This designation implies that the characteristic features that are used to define the classic connective tissue diseases are not present but that some symptoms or signs of a connective tissue disease exist.
Many member here are also diagnosed with Mixed Connective Tissue Disease. It is important not to confuse these two (undifferentiated & Mixed). Mixed connective tissue disease (MCTD), is considered as an "overlap," or mix, of three specific connective-tissue diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three illnesses, most commonly the scleroderma and/ or the Lupus features.
So, you are in a state where your disease has not evolved enough to be classified as one disease. You could remain here or you could develop specific symptoms and lab results. With medication, treatment and lifestyle changes, at this point, it might be possible to avoid further evolution of your disease. But, as is the case with any connective tissue disease, nothing is known for certain :no:
I hope that this was helpful
Peace and Blessings