hello from Canada
Hi, i am 30 years old, live in Hamilton, Ontario(Canada) and I have been diagnosed with Lupus just a month ago. so I'm still trying to cope with this new diagnoses. They told me that my Lupus is related to Ulcerative Colitis which I have been living with for 9 years now.
A month ago I had absolutely no idea what Lupus was, and today....well I am learning new things every day.
What puzzles me now is that my family DR. didn't figure out what was going on with me and took her months to send me to Rheumatologist. I told her all my symptoms and it was as if I copied it from a book or a website(now I know it). Here is a list of symptoms I kept complaining about:
Arthritis pain ( very bad) which they tested me for rheumatoid arthritis
my whole body was in pain (muscles, joints, skin, scalp, face)
very bad headaches 24/7 (took painkillers every 4 hours for 2 months straight which helped only sometimes)
shortness of breath
low grade temperatures
rash on my eyelids
and more minor symptoms like sensitivity to light etc.
and I didn't mention hair loss and ulcers in my mouth and other area because I didn't know it could be related.
I did tell her I was more irritated and depressed, etc.(which they are still not treading me for)
I had pneumonia and sinus infection pretty bad and no antibiotics worked...my doctor was confused, and didn't even mention Lupus..she had no idea so finally sent me to Rheumatologist. he sent me for a bunch of blood tests and I had an answer.
I'm happy that I didn't find out about my lupus like some other people on this website. With hospitalization due to heart-attacks etc.
It's heartbreaking reading other people's stories.
Hi twinmama, glad you found this board.. I am newly diagnosed In Feb also and everyone here has been so helpful to me. Like you i find myself wondering just how long i have been this way without the Dx.
There are alot of people here that are alot worse then i am though and they always pitch in to help lift you up when your down or to answer your questions.. Welcome
hi twinmama, there are people here from all over the world. also almost every age is covered.
welcom. look around at the other threads, your symptoms all sound lupus related.
I to am from Canada!! Just a small town northeast of Toronto, outside of Peterborough called Keene!!
I hope you find this board useful, I certainly did!!
Hi Twinmam! Welcome to whl!
OK, I wrote out a very long post and apparently hit a button that took it all away! (it was the third time third time this morning)! With that said I am just going to welcome you and I, or someone else, with discuss the possible reason for your lack of diagnosis later in the day!
Once again, welcome to WHL! We are glad to have you as part of our family!
Tgal; You are so funny :-) I know you must be frustrated when that happens because it happens to me more times than I care to mention. And it only seems to happen when I feel as if I've written something very profound and wise (lol). Then, I hit a button and "poof", it's all gone. Of course, due to brain fog, I am completely unable to remember anything that I had just written! So, we are in the same club!
Originally Posted by tgal
Peace and Blessings
Welcome to our family :-) I just wanted to respond to your question about why it took so long to get a diagnosis. In the scheme of things, you were, actually, diagnosed rather quickly.
Diagnosing lupus is difficult and can take months to years for some. This is partly because the signs and symptoms vary greatly from person to person; The signs and symptoms of lupus may change over time, and the signs and symptoms tend to overlap with those of many other disorders. For these reasons, doctors may not initially consider lupus until your signs and symptoms become more obvious (i.e.-your symptoms worsen or you develop more symptoms). Even then, lupus can still be challenging to diagnose because nearly all people with lupus experience fluctuations in disease activity (at times the disease may become severe and at other times subside completely).
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help doctors diagnose and classify lupus. If you have 4 of the 11 criteria at one time (or individually over time), you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The eleven criteria can be found in a sticky in "Newly Diagnosed"
Your doctor may also order blood and urine tests to determine if you have Lupus. Some of those tests include: CBC (Complete Blood Count), ESR (Erythocite Sedimentation Rate) - determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus; Kidney and Liver Assessment; Urinalysis (to determine if there is protein leakage in the urine); ANA (Anti-nuclear antibodies) - to determine if these antibodies are present and, if so, is the cause due to Lupus; ECG (Electrocardiogram); Syphilis - (Active Lupus will generally show as a false positive for Syphilis); Chest X-ray (to determine if there is fluid around the lungs or the heart).
Doctors, however, should base the diagnosis of systemic lupus first upon on the patient's clinical history, symptoms presented, and physical examination. After this, if Lupus is suspected, then the diagnosis should be further confirmed with laboratory tests (as mentioned above) and the use of the ACR criteria. All of this, as earlier stated, can take months to years, especially in light of the fact that symptoms come and go, mimic other illnesses, and change frequently!
I hope that you found this helpful :-)
Peace and Blessings
That is EXACTLY how I feel! LOL At least I am in a good club!
Originally Posted by Saysusie
Yes, bad, bad brain fog today. Gonna make the posts short and to the point!
@ Susie- THAT is basically what I said! LOL Glad you did it for me LOLOL
hi twinmama welcome to our whl family look forward to getting to know you we are all here for you to support you ain anyway we can hugs kim l