View Full Version : Warning

11-04-2013, 09:53 AM
I have something I want to share with everyone because I believe it can be used as a warning for us all.

Too often those of us with AI diseases assume all of our aches and pains are part of our disease. That isn't always the case. We can get sick in other ways just like anyone else and we MUST not ignore things and assume everything is disease related.

I have a friend with MS. As most of you know this is another AI disease. She has been having stomach issues for a very long time and, like most of us do, ignored it assuming her disease was starting to act up. On Friday she was in a lot of pain and went to the doctor. He told her she needed to go to the ER. She had a wedding to go to this weekend and decided not to go that she could handle it.

By Sunday the pain was so bad she finally went to the ER and there they found 2 tumors. One was the size of a watermelon and the other the size of a basketball. They did emergency surgery and removed them as well as a total did hysterectomy. They believe they got it all but she will have to go through a few rounds of chemo. Thankfully it does not appear to be anywhere else at the moment.

I am only sharing this story because I know that most of us, myself included, tend to ignore things assuming we are flaring. We can't ignore our bodies. When things stay bad for a long period of time we need to get them look into just to make sure. She was lucky that it wasn't a type of cancer that spread. Had it been, she would have been dead because she ignored it.

Just because you have Lupus doesn't mean everything happening in your body is Lupus related

11-04-2013, 03:02 PM
You are completely right, I am guilty of that myself.
But some doctors say, " it's a lupus thing", because they don't have an answer.
Or in my case, when I told the rheumy, that I was having severe shortness of breath, his answer would be, " because you are a smoker". I finally told him, that I know alot of people on this site or on the sjogren site, who have the same symptoms and they are none smokers.
When the meds finally started working, the shortness of breath got much better.


11-04-2013, 04:43 PM
You are absolutely right. Some docs are bad about it as well! I think we must pay attention and know when not to ask the rhumy. Go to another kind of doc. Better be safe then sorry.

Glad you are doing better!

11-04-2013, 09:20 PM
Or, the GI who says the sudden onset/exacerbation of swallowing difficulties is "anxiety" without laying a finger on me or reading the recs from my prior motility specialist that clearly shows I have had abnormal esophageal contractions in the past.

I'm dropping weight faster than an anorexic, can't eat/drink anything unless it's room temperature and you claim it's anxiety? Pulease.....

There are some doctors who are thorough and willing to do more than send a patient home with an RX (in my case Xanax) and get to the bottom of things.

So glad your friend was examined by a doctor who was more interested in treating than prescribing. Clearly, they saved her life.