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I was diagnosed with Lupus today!

By September 13, 2011 - 5:28pm

Just received a call from my doctor's office telling me that tests show I have LUPUS! I'm scared as I know nothing about this decease! I have the DRY EYE SYNDROME and have been depressed and fatigued lately! What can you members tell me about your symptoms and what can I expect in the future?

By April 12, 2012 - 4:26pm

Hello.
I am sorry to hear your news. I have had Systemic Lupus since the age of 15 yo and am now 41. It has been a rough journey and almost died 5x now due to complications from my Systemic Lupus and Systemic Vasculitis. I was on hospice at the age of 34yo. I have learned that it is so important to keep your stress at a minimum. Also, you must take care of yourself first and ATTITUDE is EVERYTHING! Look into taking Vitamin D and DHEA. There are other alternative remedies that will help. Relax and rest are also important. Take care of yourself and be your own best advocate and also find a friend or family member that you trust to be your advocate if you are too ill to do so.

God speed to you.
Bella

April 12, 2012 - 4:26pm
By January 2, 2012 - 1:28am

Hi Conger,

A blood test alone does not typically result in a lupus diagnosis. Unfortunately, lupus is usually difficult to diagnose and can take some time. A rheumatologist will know the appropriate tests to take; I recommend making an appointment with one in your area as soon as possible.

If it helps, my dermatologist ordered a blood test for antinuclear antibodies (ANAs) when I told him about my hair loss. When the result came back positive, he told me that a positive ANA test can be a symptom of lupus. I then went to see a rheumatologist and have since been diagnosed with the condition.

This page on the Lupus Foundation of America's website may be useful to you in your search for a rheumatologist: http://tinyurl.com/7jmxwtb.

Best of luck and keep us posted!

Stefanie

January 2, 2012 - 1:28am
By December 29, 2011 - 4:15pm

What blood test is used to determine if i have lupus? I am going to see my doctor next week and i want to ask for the right test. i have alot of symptoms of lupus so i want to be sure.

December 29, 2011 - 4:15pm
By October 15, 2011 - 11:06pm

Good Luck 2 all n thank god 4 waking us up every day wheter it is a good or bad day. Only guarantee we have n life is death not 2 find the right mate,to be rich,or to be healthy we just have to go w the flow n live the best we can. I never heard of lupus til i got it 4 years ago n neva looked it up til tonite. I guess i was waitn on a miracle. LOL

October 15, 2011 - 11:06pm
By October 15, 2011 - 9:31am

I hope i can help calm you down. I have had sle for over 30 years now! Yes, i had great doctors, kept myself educated over the years and tried to keep working as long as very possible. In fact if i had got more pain meds odds are i could have worked.
I also have fibro ..sure that was part of issue of pain in late stages of work but i had not heard about it....SO did not put it together. Now it seems to just come on lupus patients after a number of years hav e past.
I led my life pretty much how i wanted to ...yes i had to rest more and give up laying on sunny beaches...but i look 20 yrs younger for it now!
There are new drugs and many people trying to find the drug that will really knock SLE into remission. Remember as it comes it can go just as fast. I have dry eyes and mouth...i say take mouth seriously, keep dental and if dentist thinks time for drug your rheum dr has to prescribe since it needs side effects followed by blood work....make him ...i lost all my teeth due to my rheu not listening to m how dry my mouth was...and kept saying it was not necessary yet...when dentist said it was 6 months ago!
So take care of yourself even if your dt wont...get a new one. I did not have that option in this area but am now looking for one. That same rheum dr i guess is afraid i am going to sue or was....but refused to see me once he realize he made huge mistake. He never said sorry...he would not even refer me to new rheum...
SO get good doctors...but my life until now has been pretty good really. promise...i took trips, went back packing did all same things my friends did i just had to rest more. Went white water rafting even!
Don't let the fear take control....let yourself have control and plan is t enjoy life and spread as much love as possible!!
GOOD LUCK

October 15, 2011 - 9:31am
By September 21, 2011 - 8:19pm

Hi Finncess, I am sorry you have the Lupus diagnosis. You may already know but Lupus is quite unpredictable and gives nearly everyone their own personal dose of the disease. be fearless, learn as much as you can about lupus, and change your life as little as you must. i have lived with Lupus then RA, rashes, hives...for 20 years. Just finished a 7 month battle with Iritis. The arthritis gets up I do in the morning and lays me down at night. I take a variety of meds that do help some. I also use artificial tears daily. I have a team of docs that Works with me. Please take yr meds and communicate with yr docs and family. It's a new day. My hope is for a cure tomorrow! I wish you the best!

September 21, 2011 - 8:19pm
By September 15, 2011 - 8:39pm

finncess.....i ws tested back when because i kept getting these awful hives..i mean alllllover my body...huge ones too. at first they thought it ws the birth control pills i ws taking so had me go off for a couple months..but nope...still had them...went thru different elimination processes....i mean the whole shabang. then finally a dermatologist diagnosed me. i ws getting also muscle spasms, and low fevers....headaches didnt seem a biggy to me cause i suffer from migraines....swollen joints big time....eye issues...do not have the dry eye thingy or reynauds.....fibromalgia, lupus and the episcleritis....along with having diabetes..which i pretty much try to keep under control..no insulin..just pills. bursitis, arthritis, asthma, hay fever....lmbo...im a mess...but still smiling gurl.....i gotta or i will end up in a corner blowing bubbles!! LOL....and you are right...cld be a positive for the other two things u have....im glad ur gonna see a rheumy aka rheumatologist. well im off to bed....yayyhoo, no nap today...so the flare is getting better. TAKE CARE & SMOOCHES! <3

September 15, 2011 - 8:39pm
By September 15, 2011 - 6:56pm

Hi zoeeadam,
Thank you for your message! I am seeing the Rhematologist next week. My family doctor did the blood tests and called telling me about my having LUPUS, according to the blood tests. I do have the DRY EYE SYNDROME and REYNALD"S as well, so I'm hoping against hope that that's what showed in the tests as an indicator of a AUTOIMMUNE diagnosis..and not LUPUS ! What kind of symptoms do you have and are they severe?

September 15, 2011 - 6:56pm
By September 15, 2011 - 11:10am

hi FINNESSE...SO SORRY TO HEAR THIS. BUT EACH PERSON WITH LUPUS IS DIFFERENT YET THE SAME WITH THEIR ISSUES I HAVE FOUND OUT. SOME CAN DO MORE THAN OTHERS AND SOME NOT. I PRAY THAT YOU HAVE A VERY UNDERSTANDING RHEUMATOLOGIST AND/ OR DOCTOR TO HELP YOU WITH THIS JOURNEY. I WS DIAGNOSED IN 1996 AND AM STILL STRUGGLING. THO MY ANA TESTS COME BACK LOW POSITVE, I HAVE HIGH SYMPTOMS. IN FACT IM JUST NOW TRYING TO DEAL WITH ONE OF MY WORST FLARE UPS...THIS IS A HARD DISEASE BECAUSE WE ARE ALL MOSTLY A-TYPE PPL WHO ARE GO GETTERS AND THIS JUST TENDS TO HINDER US, OUR LIFESTYLE...ITS A PROCESS MY DEAR BUT U WILL BE ABLE TO GET THRU IT WITH SUPPORT HERE & YOUR FAMILY AND FAITH.

September 15, 2011 - 11:10am
By September 13, 2011 - 8:12pm

Hi, I just joined the group today but I have been dealing with Lupus since 2007. I also have Fibromyalgia since 1995. My Lupus symptoms were mostly fatigue and more intense pains than I had with just Fibro. I also started to lose my hair and get really red when in the sun. I am more prone to blood clots and had one from an injury about a year ago and my asthma gets really bad. I do get dry eye but drops do help for that. Don't be scared and talk to your doctor and read about the disease.

September 13, 2011 - 8:12pm

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