View Full Version : Recently Diagnosed
10-05-2008, 05:36 PM
Hi everyone. I was diagnosed with undifferentiated connective tissue disease about one and one-half years ago and at my last RD visit the doctor informed me I'm no longer undifferentiated. I've been "promoted" to lupus and Sjogren's syndrome. So now I have a definite label which is good in one way, but I wish it was something less serious. Anyway, I'm looking forward to getting to know the veterans here and learning as much as I can about this new challenge in my life.
10-06-2008, 12:21 AM
Welcome to our family. I'm sorry to hear that you UCTD was upgraded to Lupus and Sjogren's. However, you've come to the right place if you want to talk with others who have experience with both illnesses. There are a lot of very informed members here who are more than willing to answer your questions, provide information, give you advice, and just be here to listen when you need to talk.
I'm glad that you found us and that you decided to join our family!
Peace and Blessings
10-06-2008, 04:09 AM
I am waiting for my label. Right now I am a no name brand. But I have many of the markers, just not a good doctor.
This site is very friendly with alot of good people with knowledge to share.
Glad you found us :)
10-06-2008, 10:06 AM
Thanks Susie and Sits. I appreciate the warm welcome.
Sits: I love that little "Oh look...a cookie" at the end of your posts. Something about it is so cute. Is there a story behind it?
10-06-2008, 04:52 PM
The character in the photo is Hammy from the movie Over The Hedge. He has a line in the movie, "But I like the cookie" He has such a sweet voice and charming personality.
If you haven't seen the movie rent it. It has a few good belly laughs in it.
10-06-2008, 05:28 PM
I'll keep it short because with the brain fog I have a tendency to lose focus quite easily. My name is Tyari and I'm 28 y.o. and I was recently diagnosed with SLE and fibromyalgia as of 8-15-08. I have been on disability since 7-29-08 because I became so confused and 'dazed' that I couldn't do my job anymore. I don't know what to do. I've been going to my rheumatologist, pyschologist, psychiatrist, dermatologist and a couple of other specialists and they still don
t know which is causing the brain fog so they are not treating the fog yet. I have had the brain fog going on 4 months now on a constant basis. I have had a CT scan, all kinds of bloodwork and more recently an MRI of the brain and the CT scan and MRI didn't reveal anything special. I have to have neuropsychological testing done next. I need some advice, guidance, support. Anything and everything because no one around me has an autoimmune disease so needless to say, its hard for people to understand. I'm on Plaquenil (2x), Relafen (2x), Flexeril (as needed) and Cymbalta (1 x). Any advice, words of encouragement, comments - all welcome. Thank you. (not so short after all :)
10-07-2008, 01:53 PM
It is odd how being diagnosed is a relief. A feeling of control..now lets fix it. We can try to manage our symptoms, prevention is key through, exercise, healthy food, medications on time, on schedule, manage stress and to find joy, happy in each day as we live it.
Be open to change....changing your lifestyle. I've learned to say this is my life, though it gets tiresome at times...but for the most part it is a good life...
Be happy, keep well..
I just wanted to say hello, and welcome. Looks like you've already met some folks here. Sorry to hear about your "promotion". As if we don't have enough challenges already. If you are looking for "veterans" in the autoimmune disorder sense, you've come to the right place. There is a wealth of good, accurate info to be found here, as well as people who understand what you are going through. Welcome, and make yourself at home.
10-07-2008, 03:43 PM
Thank you everyone. I feel better already! :)
10-10-2008, 07:14 AM
Hi Tyarishanese :lol:
Welcome to our family. I think I responded to one of your other posts. With reference to your brain fog, this is a symptom of Lupus that many of us suffer with. In fact, quite some time ago, we did a lot of tongue-in-cheek posts about how our brain-fog affects us. In general, Lupus Brain Fog is a very common symptom of our disease. There is another illness that many of us suffer with, Sjogren's Disease. This is often an overlap disease with Lupus and it, too, can cause "brain fog".
Here is a site with information about Sjogren's Disease:
But, let me give you some clinical information about Lupus and brain fog:
The immune system, like most of the body, requires balance to function properly. T-helper 1 (Th1) cells and T-helper 2 cells (Th2) help regulate the body's response to foreign invaders. Th1 uses white blood cells to go after viruses and cancer cells. Th2 immune cells use antibodies to go after bacteria.
Normally, the body strikes a balance by switching back and forth between Th1 and Th2. In a person with an autoimmune disorder, one dominates and suppresses the other.Besides autoimmunity, Th2 dominance is characterized by a tendency toward allergies, frequent colds and viral infections, and cancer.
Both Th1 and Th2 cells make a protein substance known as cytokines. Cytokines cause inflammation. Cytokines are a necessary part of our immunity. Inflammation should be a temporary response to injury or infection. It is the over-production (too many) of certain small cytokine molecules that leads to the invasion and inflammation of an organ or body system.
In the brain, cytokines can cause behavioral changes. They can either prompt or worsen depression, anxiety, or anorexia. They may cause you to become withdrawn. Cytokines create fatigue and interfere with our sleep patterns. They are one of several things that doctors believe are responsible for what we call "brain fog." Cognitive dysfunction (aka: brain fog) can also cause confusion, and difficulty in articulating thoughts, memory impairment and difficulty concentrating. This cognitive dysfunction may come and go on its own, but most of us have had to take antimalarial drugs (such as Plaquenil) , tricyclic antidepressants or serotonin blockers, or DHEA (a natural steroid prohormone produced from cholesterol by the adrenal glands, the gonads, adipose tissue, brain and in the skin (by an autocrine mechanism - Brand names for DHEA include Prastera, Fidelin and Fluasterone).
Autoimmune conditions are named or categorized according to where in the body cytokines are being overproduced and how the disease manifests itself. For example, an overproduction of these cytokines in the joints causing pain and swelling is called Rheumatoid Arthritis; when over production causes systemic symptoms, it is often called Lupus. Autoimmunity is one disease with many different faces and a myriad of symptoms...brain fog being just one symptom that is quite common.
I hope that this information helps a bit!
Peace and Blessings