I may post an Q&A blog if I need to clarify any questions that anyone may have.
Page:
/mctd.html
The MCTD page is up and running. It is made to create a basic understanding of the disease that I was able to gather all in one page.
I may post an Q&A blog if I need to clarify any questions that anyone may have. Page: /mctd.html
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I am going to do more research about my rare autoimmune condition of MCTD (mixed connective tissue disease), since it is the holidays and nearing the end of 2014 to begin the year 2015 within less than two months. I will gather and type up a researchful blog about this disease because this disease and topic itself is scattered. I am hoping by March 2015 or sometime during the Spring of 2015.That I will have enough information to share and why will it take so much time. Because I have a family to take care of, a job and as I mentioned this disease is so scattered even google can't help me. I hope I can help others gain some kind of insight of this disease along with myself that wants some kind of hopeful and helpful answers.
The reason why I called this dragonfly warrior is because my other condition other than the butterfly symbol is the dragonfly symbol and the other day I found some information of why the dragonfly was chosen. Until then I will keep posting and there is a group on facebook I have made for the Butterfly Mask Warriors. https://www.facebook.com/butterflymaskwarrior Click here>>> _ Well I have my final diagnosis and it was something completely I have never heard of that google does not even have a full answer or useful resources to explain what I have. As the ribbon states I have Mixed Connective Tissue Disease (MCTD) along with Fibromyalgia. It is a sibling of or child derived from Lupus, it overlaps with Lupus and other autoimmune diseases. What it is:
Definition by: http://www.uptodate.com/contents/definition-and-diagnosis-of-mixed-connective-tissue-disease INTRODUCTION Mixed connective tissue disease (MCTD) was originally defined in 1972 as a connective tissue disorder characterized by the presence of high titers of a distinctive autoantibody, now called anti-U1 ribonucleoprotein (RNP) (previously termed antibody to extractable nuclear antigens [anti-ENA]) [1]. The central premise of the MCTD concept is that of an overlap syndrome associated with anti-U1 RNP antibodies that incorporates selected clinical features of systemic lupus erythematosus (SLE), systemic sclerosis (scleroderma [Scl]), and polymyositis (PM) [2]. The definitive diagnosis of MCTD is often complicated by the fact that the overlapping features tend to occur sequentially [3]. This confusion arises due to the overlap of the various diffuse connective tissue diseases (DCTD), as well as to changes in the underlying pathology of the illnesses. The definition and diagnosis of mixed connective tissue disease are reviewed here. The clinical manifestations, prognosis, and treatment of the illness, as well as a detailed discussion of anti-U1 RNP antibodies, are presented separately. (See "Clinical manifestations of mixed connective tissue disease" and "Prognosis and treatment of mixed connective tissue disease" and "Anti-U1 RNP antibodies in mixed connective tissue disease".) DISEASE CLASSIFICATION Five major diffuse connective tissue diseases (DCTD) exist according to classification schema: systemic lupus erythematosus (SLE); scleroderma (Scl); polymyositis (PM); dermatomyositis (DM); and rheumatoid arthritis (RA). A sixth disorder, Sjögren’s syndrome, is commonly associated with each of these diseases but is called primary Sjögren’s syndrome when it occurs alone. The classical clinical descriptions of these disorders are well known, and most patients with well-differentiated disease are easily recognized. However, the definitive diagnosis of each of these disorders is based upon criteria derived from expert opinion; as such, the diagnostic criteria are updated from time to time, depending upon the relevance of contemporary research. Clinicians experienced in the clinical presentations of the connective tissue disorder often note that one DCTD seems to evolve into another over the course of several years [4]. This occurs in about 25 percent of patients, who are then said to have an overlap syndrome [5]. (See "Undifferentiated systemic rheumatic (connective tissue) diseases and overlap syndromes".) My findings - The point here is that is a rare disease. - Fatality chance is 4% if you are a high risk (I am mild thankfully) - There is no cure for this either treatable with medication - There is no professional website or foundation that supports my condition because its so rare and very uncommon - From my understanding its like one and a thousand chance of getting this and being diagnosed with it - Survival rate after being diagnosed is an extra 10 years (did not specify if I only have 10 to live or 10 years extra added on) so I am presuming I may live to see 50 and above. - Children are also affected - Ages of those who are primarily affected before and after diagnosis 20's-30's - Flares are constant but not all at once from the different symptoms i.e. lupus - You are at higher risk if you are planning to bring another family you have to consult a doctor and be very carefully monitored because it will progress the disease to a different stage - Eventually it will attack the heart, lungs and kidneys So for the time being I have to continue Cymbalta and Mobic to keep the disease under control before I can start the new medication in January 2015. Yay me I'm the lucky one who gets a rare disease that not even google can give me a good answer. My whole body is on fire, I am feeling shocks and fracturing. I hate this shit! I am at a loss for not having a good resourceful information that will help me understand what my disease is even though it should not define who I am. I just want a clear understanding of what can I do to control this disease and benefit to live a normal life to have a job, spend time with my family and be more active than what I am doing now. This is a temporary tattoo because I wanted to put it on. I've been asked why don't you have a tattoo? First off my mother said it was the sign of the devil imagine this growing up. And then years later she tattoo's her eyebrows. I get bitch about temporary tattoo's of like a flower or a butterfly and when I'm probably in my late teens she gets her eyebrows tattooed. Really. Guess how thrilled I was. I don't know why people would do that but eyebrow trends do change over time. And I don't really care for trends. I just noticed a fat mosquito hovering over me. I hope you get bitched slapped soon. Okay back to what I was trying to say. The butterfly temporary tattoo is what I like. Maybe for my 30th birthday I will get it next year in March. For my 1st tattoo because its symbolizing that I am a warrior fighting everyday struggles. And I am happy with my decision on that. Then get a different one representing my family at another time. I was thinking on the back of my neck as a perfect spot to put it at. Or on my inner wrist who knows I have 6 months to think about it.
Yeah I think thats the perfect butterfly shape for me. I have decided to take myself off the generic both Cymbalta and Mobic. It has made me lazy, decrease in activity, decrease in appetite, couldn't think correctly, or speak as much as my brain activity wanted to, I didn't want to wake up, awake during the middle of the night hard to fall back asleep, and to top it off there's a class action lawsuit against Cymbalta. So yes I'm going to try something else. So yes Fuck it. I felt useless. Plus I was given permission to take myself off of it, if I felt miserable I wanted to give it a chance for a week but yeah its not working for me. Hot shower it is thats the only thing that works.
Click here for Blog Experimenting on Cymbalta and Mobic> _ Each medication has a side effect.
Mobic: cause drowsiness and dizziness take with food (okay). Cymbalta: cause drowsiness (fun) Do not take both at once. I was told. Okay let's try this cymbalta during the afternoon, and mobic at night. I felt strange, brain capacity not up to speed, especially at work I couldn't figure out how to sensor the damn clothing. So I flipped it mobic in the morning half dosage, and then cymbalta at night. A little better since I was actually able to take my multivitamin (it keeps me awake). Now lets try the full dosage of mobic the next day I was sleepwalking at work basically ugh. Now I switched back to the half dosage and since its my lovely aunt flow week I can't take my multivitamin (not happy damn birth control iron pills) took it after I cleaned up the house abit. Yay why the fuck am I feeling shocks and extremely tired to where I pass out my my kitten is licking my ear saying hello mommy. Since I have several days off work I am going to see how I should make this medication combo work. Probably eat a little more before taking the mobic and cymbalta or just say fuck it its making me feel like shit on top of my shark week. I hate medication. My specialist doctor declared it Fibromyalgia but Lupus is not in a clear yet since I had a 3rd blood test done reason being because of the false positive that resulted in my 1st blood test which was more accurate because there was enough blood to sacrifice so with the 2nd one I was barely able to produce enough blood as I explained to her and she appreciated my concern of why I did not approve of the 2nd test so for more of a clear test they did their own in their lab to clear it out of my doubt of what I thought was inaccurate. My inflammation was very high and she noticed that I was and still inflaming. So they took 5 more blood samples and she called them an complete idiot for not doing an xray on my spine just my elbow because it first started on my spine.
The medicine that I am being prescribed is Cymbalta and some other medication which I forgot what it is. But she was able to tell numbers wise I do not have Hiv I tested negative for that, I was ranked one point something out of 10 on my blood test for Lupus in the ANA test (antinuclear antibodies). I liked my doctor very much she was very funny, approachable, professional, the staff are very friendly, despite the 40 minute wait in the office. It was nice I was reading about medications for Lupus while I was waiting to be called and the crazy side effect was that it may cause cancer causing agents. I'm like uh no next medication please. I do not need that on top of my chronic illness problem. So I am going to be on a 30 Day trial of Cymbalta to see if that helps me. I return to my specialist within 3-4 weeks to see if that helps. And my blood results. No offense to my primary care physician they should've called me after waiting a month on my blood test to say I tested negative on my 2nd blood test saying we have some good news for you. It was hell that my body was attacking me fully after having my blood withdrawn while its producing more blood. That I think was very unkind while the other medication barely helped. I've had to leave work probably twice early saying I am in severe pain loosing how ever many hours off my paycheck. It was just wrong. So yes Lupus is not out of the clear until October 29th to find out my final blood result. Ugh I'm still inflaming from the blood sacrifices after 14 tubes within 4 months.
If it was that damn simple everybody would be donating blood. Let me tell you why I do not trust the 9th blood test because I have given so much blood within one month I couldn't even fill up the tube not even half. So my doctor after she was so thrilled to tell me it could be possibly fibromyalgia. After one month waiting for a damn blood test result you couldn't have told me sooner? I want to have two negative results not just one positive (first test) and one negative (last blood test) so when I finally see my rheumatologist (yay I spelled it correctly without google!) to get a final test making it a 3rd result to make it an official diagnosis. So when researching Fibromyalgia apparently its cousins with Lupus just by the symptoms alone so here's a chart of the symptoms I've put together so you can see what I mean.
I've added images so you can see. So there it is you can see why I call them cousins. From that I have read that Lupus can be tied in with Fibromyalgia. I can have both or one of the "chronic illnesses" out there.
I am not deleting this webpage I have made or changing it all I'll add Fibromyalgia to the list of topics forum. In the mean time enjoy this image of a three legged kitten that I temporarily and hopefully it'll be permanent soon. |
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About this Dragonfly WarriorMy name is Miriam and I have chronic illness that is invisible to others. My autoimmune disease is called Mixed Connective Tissue Disease (MCTD) and I have Fibromyalgia. This is my page of my journey of how I am progressing. We are the warriors of the butterfly under this mask, |