I have a question for those who have officially been diagnosed with Lupus. If you're like me, you have asked yourself over and over.... How or why do you think you ended up with lupus? Has your doctor given you his/her medical opinion as to why you have it? I'm just curious what others think if you don't mind sharing. Thanks
Hi Ann...first of all thank you so much for your input, and I hope you are having a good day!
I grew up in an area that is now getting a lot of public attention in my community. In the 1940's and 50's high levels of uranium, thorium, radium, actinium and other radioactive elements were being disposed of near my neighborhood. In the early 90's the government started cleaning up the dump site, but it has been found that the creek that ran through a big part of our community has shown high levels as well. This creek at the end of my street, and it would flood up into a park that I played at just about everyday back in the 70's. I have found through facebook that many of my classmates/neighbors and parents have died from/ or are fighting rare cancers/auto immune disease/infertility and so on. There was a lawsuit filed against Malinkrodt Feb 2012 for knowingly dumping that hazardous waste. I don't know if that is why I have lupus, but I have found through talking with old neighbors that I haven't spoken with in 30 years that 4 of us have Lupus just within a 5 house radius. I have always wondered why I have this. I come from a HUGE family. My dad had 15 brothers and sisters(which leads to about 120 cousins, and 120 2nd cousins).... and my mom had 4 brothers(several cousins on this side as well) and no one else has this. It doesn't change anything, just searching for answers. thanks
For me it was no-brainer as far as genetic predisposition- rheumatoid arthritis is suffered by my father and sister I was the one who got lupus
Hello Knick,
I had symptoms from a child of coldness bad, congestion of the lungs and when i reached 14 i was going into autisums not knowing what i was doing then at 18 seizures/strokes/DVT then i had tests and was told i was born with cervical spondylosis as my backs disfigured, then 5yrs ago skin issues came and i was sent to a dermo who did bloods then i went onto a rheumo who did the same...and i was diagnosed with A1 Diseases overlapping autoimmune Diseases which are stated on my profile and was also told i was born with it and all the issues since a child Lupus had caused and i'm now 44, so i've survived so fare with it although it's really affecting my health now and then my Dermo told me to mention to my siblings to get tested and my youngest sister went she's got Lupus but symptoms my parents had now come into light of symptoms i have as they're both dead but if they'd have been alive, i know they would have been tested.
Hugs Terri xxx
Why me?
This is a wonderful discussion, thanks for starting this! Yes, I have had this discussion in my head many times - what path lead me here? First, my mother was un-diagnosed but I believe she had lupus. Then the question comes _ why me and my siblings aren't affected? My mother and I both had German measles, and then I had a series of tonsilitis that kept re-occuring. Not long after that I 'mysteriously' starting losing alot of hair. I was referred to a doctor, and all he said was I was staying up too late and not getting enough sleep. Through out my life, I've had strange episodes with fatigue, which went unexplained, and I just pushed on through them.
My next visit with my Rheumatologist is Oct 1st, and although he first diagnosed me as RA, he changed it to lupus on my 2nd visit when he got my blood work back. I haven't questioned his diagnosis, or wanted a 2nd opinion. I feel it is valid, and I would rather spend my time learning to take care of myself, instead of fighting it. Acceptance is the key for me : ) Trisha
Hey Knick!
I was recently diagnosed not too long ago, but I'm still on the path in trying to figure out how I got lupus. After much asking around in my family, no one has lupus.. So either someone had to be a carrier or that I had some sort of mutation in my gene, perhaps that maybe gave it to me? It's all up in the air still~
My health record hasn't been the best, especially since i've started college 3 years back. But my best friend's mother remembered that I would have some sort of joint problem when I played sports, that I would always complain about my arm. Whether I was over-doing it or it was the lupus, who knows!
But I do know for the fact that I stressed myself to the point I brought this disease out. Environmental stress or regular stress, those were the key trigger. During my spring semester, I ran on little sleep, I was interning, took on too many classes, teaching a class and having my mom push me to hurry up and graduate faster. I didn't have time to stop and take a breather. But when my finals were over, that's when my body decided to push the self-destruct button. But I'm glad it was able to hold up until I finished all of my classes.
I also had a knack for getting viral syndromes that I would be sent to the ER or just getting sick a lot.
Maybe viral syndromes were for me? I first had it 3 years ago, and then a few months ago they diagnosed me with a viral syndrome as well, before they considered it was lupus.
-Julie
Ann,
It was really frustrating when I was in the hospital, a few months ago. ER doctors, my doctor, and the family's friends doctor couldn't figure out what the heck was wrong with me. First it was a viral syndrome, then fever of unknown origin and then I was getting treated for lyme disease. Awful mess! Lupus never crossed my mind... Maybe because I had little info about it, except that "dr. House" was quoted on it, a lot. Bleeegh~
At least they figured it out, yeah? Minus my doctor screaming at the ER people to admit me in.
I love reading all your input. I had an appointment with the Nurse Practioner at my Rheumotlogists office yesterday. I told her my story about the contaminated creek and dump sight in my neighborhood. She was almost in tears hearing how so many have lupus and other auto-immune diseases within my neighborhood. She had my Rheumatologist Dr come in and we discussed the dump sight of the uranium and other toxic materials. My Rheumy has advised me to inform the CDC about the contamination and give the names of the others that I know of that have been diagnosed with lupus within a few houses of where I grew up. . He feels since there are several others in such close proximity there is a strong link to my illness and that creek and it should be reported to the CDC. Thank you so much for posting your thoughts,,its all very interesting to me. I hope we can keep this thread going to educate and offer a place to vent our frustrations.
Ann,
Oh yes! The Epstein-Barr virus does sound really interesting. I was also getting sore throats and fevers constantly as a kid, getting drugged up with antibiotics. The ER doctors thought I had mono 3 years ago, since I experienced the symptoms but my spinal fluid came out clean.
It's such a hard thing to diagnosed, I guess they never really assume it is. Haha.
But yes! I'm really glad my doctor did something about it. I went to the ER back and forth within 5-7 day time span and they just kept sending me home, even though my blood counts were getting worse and worse. They took so much blood from me that month, it was terrible.
Knick,
that's awful to hear about the contaminants at your creek! It's amazing how much things can effect the environment and as well as your health.
Hello Knick,
Ann's pointed a good view out and also made herself heard with her point of view, which lets them know the other end the risks they're putting on people's lifes.
I do know this will make not just yours but everyones health bad besides, it's a shame you can't move property.
Where i live it's into the countryside, where there's canals and also the waste from sewages...they're re-digging and putting larger tubes in for it to pass through and OMG all you can smell in the air is motion but because we're buy those sewages anyway... of a morning all you can smell is a sickly smell and sometimes in the sink a duck egg smell starts coming through.
Although the issue is different i still know what we live by can cause health issues.
Love Terri xxx
For me it is genetic. My sister has psoriasisand psoriatic arthritis, cousin with RA, aunt with rheumatic fever. I ended up with lupus, sogrens, and Raynauds.
Hi Lyn,
Mine was genetic also and my youngest sister and how you have sjogrens...why not join our seperate site on sjogrens syndrome as there's loads on the condition and i do have that bad, here's the link if your interested as it's always nice to know what comes with these disease.
www.sjogrenssyndromesupport.org
Terri :)
Lyn Tennessee said:
For me it is genetic. My sister has psoriasisand psoriatic arthritis, cousin with RA, aunt with rheumatic fever. I ended up with lupus, sogrens, and Raynauds.
Ann A.,
I believe that mine is caused by more than one of the probable causes. While several females on my maternal side suffer or have suffered from RA. That said, as a child I had mono as well as hydradinitis. Both were treated with large amounts of anti-biotics that I believe left me susceptible to many viruses that most people would have developed an immunity. This is one of the reasons why I no longer take anti-biotics unless I am in the hospital and it's not an option. I am the only person in my family to develop lupus although my aunt has RA. I also lived for about 7 years near high power lines in San Diego. This was a time when my hydradinitis was VERY active as well as when my son was born...he was 3 months pre-mature. At the time, I obviously had no idea that Lupus can cause complications during pregnancy. After he was born, they never were able to understand why labor started so early.
I also believe that stress over the last 2 years are what brought on many of the pneumonia episodes that finally landed me in the hospital as well as causing my stroke in May (age 44). I have always had trouble controlling my BP and they think that is what caused the stroke. I ended up being in the hospital in July for a carotidendocardectomy (cleaning of the artery) for 5 days for a one day procedure. They were unable to control my BP which is when they brought in a kidney and hypertension specialist. He is the one that ordered the kidney biopsy that discovered the Lupus. Without him I don't know how long it would have gone undiagnosed.
I have decided to take control of the disease and not let the disease control me. I have become stronger since joining this site and feel like doing some things such as changing my diet, taking supplements for nutrients that I am not getting in my diet, and doing minimal exercise when I can.
It is very interesting to see some of the commonalities between the lupus sufferers.
I was just recently told I have Sjogren's as well. I see my doc on Tuesday to go over results of my most recent labs...hoping the changes show in the report.
What a great discussion Ann A.,
DeAnne
Ann A.,
I am sorry I misunderstood the topic. We lived under high power lines in San Diego, I always thought they had something to do with the increase in the hydradinitis symptoms and the pre-mature birth. I now see your goal and find it admirable that you are informing people about the environmental impact on long term health issues.
Go get 'em,
DeAnne
Sweetie,
These stories were so very eye-opening and as it happens I am watching a documentary on many different items, however one of the first things they spoke about was genetic tendencies vs. environmental affects. What seems to be the consensus is that although some people may have a genetic predisposition, it is usually an environmental factor that results in the onset of a disease. I immediately thought of this discussion. But you saw this long before. I learn so very much from all of you and am so thankful I found my second family. I admire your tenacity and knowledge about so many of this disease and many of the others that hitch a ride with the lupus.
Hugs,
DeAnne
Ann A. said:
DeAnne,
I strongly believe that when we each have the most accurate understanding possible of the route that brought us into a state of underlying autoimmunity we will also have a better understanding of the routes that we must take in order to reclaim our health. I value what we have in common and I value our diversity. Your story is fascinating.