View Full Version : Not sure what's going on??
I'm Megs, 28 year old from Australia.
I *think* I have Lupus and came across this site while looking for information.
I don't know where to start. I've always thought there has been something wrong with me healthwise, there just have been too many things go wrong for it to be a coincidence.
I've had ongoing problems with my hips/pelvis, mainly caused by pregnancy, but there were also issues before then with labreal tears etc. Anyhow, my specialist decided to do some blood tests to check for Rheumotoid Arthritis. That test came back negative, however my "ANA" results came back very abnormal. She decided to leave it and retest my ANA in 6 months time, which we have just done, and apparently the results are even worse. She mentioned me having "SLE Lupus" and has referred me to a Rhuemotologist who I see next week.
I am also currently in remission for ITP (a blood clotting disorder) and Greave's Disease (and over-active thyroid disorder). I also suffer from Psorisis and in the past have had Glandular Fever and Chronic Fatigue Syndrome. All auto-immune disorders. Coincedence or not? Every single blood test I've had in the last 10 years has come up with abnormal ESR levels, of which Dr's normally try and say I must have had a cold or some other bug at the time of the test, despite me not being sick.
So, I guess the Rhuemotologist will run a whole bunch of tests, but i'm struggling to fit my sypmtoms into classic Lupus symptoms.
Can anyone give me any advice?
03-18-2008, 11:00 PM
Welcome to our forum where you are always welcome. There's compassion, understanding, empathy, experience, etc.
Under "Newly Diagnosed" there is criteria which describes what labs need to be completed. I would print them out and take them with you to the rhuemy appointment. Many on this forum have been on the five year diagnosis; I don't wish that for you at all. Make sure you have a C-Reactive Protein, Anti DNA AB by Farr, Sed rate, Complements C3 & C4 and Anti-Nuclear Titers. Follow up with the rhuemy every 3 months in order to better manage Lupus.
Please keep us updated on your labs and what your rhuemy says.
03-19-2008, 05:25 AM
It can take awhile to get results from blood work to match up. Everyone with lupus can show different symptoms but there are some shared symptoms.
I'm still in the throws of trying to get my rhuemy to co operate with my family doctor. It's very frustrating...and I'm not sure that I'll be staying with that rhuemy as she is reluctant to even do blood tests and doesn't seem to believe in lupus at all.
My family doctor has been following some of the blood work but she doesn't have complete picture and she needs a specialist to order some of the blood work that needs to be done. I feel like a dog chasing my tail.
Thank goodness for this site or I would have lost my little mind a long time ago.
Hang in there. and welcome :)
03-19-2008, 08:57 AM
Just wanted to say hello and welcome. Getting to a diagnosis can be so frustrating. You have come to the right place for support and information. Whatever your ultimate diagnosis (so many autoimmune conditions can overlap, as you well know) this is a place of compassion. Good luck with your appointment. Keep us posted on your progress.
I wish you well today.
03-19-2008, 12:05 PM
Nice to read you..welcome.
Advice, before going to your Rheumatologist create a list by date, or about date and year with symptoms you were experiencing, big or small, like rashes, headaches, pain...pregnancy and etc. Leave out nothing. Also list all tests and results. If possible gather all the information from your records from previous doctors. Here in the USA some will give you a copy, some will send them directly to the doctors...
Lupus is accumulative...symptom here, a symptoms there...can add up to Lupus over time...
I have Lupus SLE and Sjogrens Syndrome, somewhat alike but different. Joint pain, fatigue, rash, GERD..same same. Your CFS could be Lupus, perhaps...Sjogrens......
In any case, with or with out a diagnose they should treat your symptoms...Plaquenil was my lifesaver ring....
Joint pain, joint tears, fatigue, positive ANA, Abnormal ESR..it all seems to fit within the realm of Lupus. Maybe your pregnancy aggravated the joint pain instead of the other way around, if you know what I mean...
And some of the symptoms of CFS and Glandular Disease are the same as Lupus. Lupus mimics many diseases....
And the disease you mentioned are autoimmune diseases...Graves. Which can be secondary to Lupus or vice versa.
Lupus is my primary, SS is my secondary....
Some quick short thoughts to take with you to your appointment...let us know the outcome...
And come back just to chat up about life with illnesses...about Down Under, happy, sad...good or bad. I love it all. Learn, teach..laugh...cry...it bonds us humans together...
Keep searching for your wellness...hope you find the answer next week.
Thanks guys, I really appreciate the warm welcome. That means a lot to me.
I keep having this crazy fear that it's been Lupus all along, and that all of these other problems i've had medically, have just been symptoms of that, and for the last 28 years, Lupus has been attacking my vital organs.
I keep having this recurring dream that I go and see the Rhuemotologist and he says that my organs are all shot to pieces and there's nothing left to do but spend time with my daughter before i die.
Then I begin to stress about, do i go through the battle of having another child so that when i die, she's not all alone, or do i just concentrate on spending what time i have left with her?
I know....morbid, and most likely irrational. But that's were my brain keeps going and i can't seem to turn it off. I'm just so TIRED of being sick all.the.time. I don't think i've EVER been to a Dr or a specialist and they haven't found something abnormal or wrong with me.
My pregnancy with my daughter was HORRIBLE. I suffered from a condition called Hyperemesis Gravidurum, which landed me in hospital from when I was 5 weeks pregnant for 2 months. Then I vomited about 20 times a day until she was born. On top of that, my pelvis seperated at 9 weeks pregnant, and my OB wouldn't take the pain I was in seriously until I was 16 weeks pregnant and the damage was too far gone. As a result, I was in a hip brace and on crutches from 16 weeks pregnant and then in a wheelchair from 30 weeks. The pain was excruciating. I've had trouble finding specialists who knew what was wrong with me, and it's taken me 2.5 years to find a specialist who knew what the deal was, and to begin treating it. So basically for the last 3 years,s ince I got pregnant, I've been walking around with a dislocated pelvis.
And now this.
Sorry for the novel. I don't really have anyone who "gets" how I'm feeling. How some days it takes all of my energy to just drag myself out of bed in the mornings, let alone run around after a 2 year old, cook dinner, clean the house, drive around doing errands and grocery shopping. I'm seen as the hypocondriac of the family, because surely no one can possible have THAT many things wrong with them.
sick n tired
03-19-2008, 03:12 PM
Welcome....your writing was not a novel. It helps to vent.
This illness can be very frustrating because it is hard to diagnose. Oluwa is right. It is a collection of symptoms.
Sorry to hear about the pain in your pregnancy. Has it ended when the baby was born? That sounds awful. I used to think that I had pregnancy's from he!!. But yours take the cake.
I, also, seem to be the hypochondriac of the family. At least my mom and siblings. My hubby is better now. Interestingly enough, they were better when the diagnosis came in but since I didn't die they are back to the same old thing.
Hope you appt with the rheumy goes swimingly and you get lots of answers.
Oh look, I wrote a novel,too,
03-19-2008, 07:14 PM
You have us...close as your fingers tips...
Many here have children and I am sure they will be glad to share some shortcuts, tips and etc...to alleviate the running raggity feelings.
Please stop worrying about things that haven't happened...We fear most of the those things and more than likely things of that nature don't happen.
Worrying seems to be sucking the life out of you...stress literally kills, so please stop.
When my mind wonders aimlessly I just envision a big red STOP sign. All eight sides...red, see it...big as life in your mind. And do it every time when you catch yourself running aimlessly in every direction. Especially when you lay your head to rest to sleep...when most worrying can occur.
When we have all the physical symptoms, the damage from the diseases why would/do people think we are hypochondriacs. They must be the crazies. No one has said that to me, if they would I would simply tell them to go to hells, with a snarled lip and a crinkled up forehead...scowling, that there must be something wrong with them to think of such a silly thought. Mindless or ignorant.
I am sorry your family thinks like that... don't discuss your health with them. No one needs that stress.
If ignorant leave brochures, books laying around on their coffee tables about the diseases. I am sorry they put you through that..it is so unnecessary.
Sleep well and remember STOP