Questions that have stumped the doctors
Hi Everyone (sorry so long)
Let me start by saying that I wish I had participated here earlier. I had a real problem accepting this illness in the beginning and I was in such a constant flare that I didn't really have the energy to use a computer. I also found that every time I read something new about what could happen I would freak right out - I was so fragile. Anyhow things are looking up and I am so grateful for the time and energy that people devote here. It really is amazing....
I have a great rheumy. He is caring and accomodating, willing to try new things but cautious for my sake etc. He did miss something major last year that my GP found though so it worked out. But I thought I might throw a couple of things at the group because my rheumy and GP and cardiologist are conflicted.
1) I have an almost constant pain in my left side under the rib cage right on the edge of my torso. It gets worse when the lupus flares. So I think its inflammation.....I have had 2 abdominal U/S finding nothing. I thought it was the spleen. I has had the endoscopy / all fine. The pain is mostly an irritant but any ideas?
2) I had a mitral vavle prolapse dx at about 20....told was mild/ not to worry. Last year an exam revealed things were sounding loud. Turns out the mitral valve was leaking like crazy with severe pulmonary distress. I thought the dizziness and super fatigue were all lupus. The bad news was I needed open heart surgery. The good news is, it was a success. They repaired the valve with a rubber ring and other than a massive scar, I feel much better. I can actually exercise a bit for the first time.
sorry to ramble.....question - the cardiologist thinks lupus was the cause of the valve collapsing - says the scar tissue seemed to reveal this. Rheumy thinks the prednisone caused it. I guess it doesn't really matter either way because we are doing our best to control things. Any ideas about this?
3) Weird vision things....lastly I get migraine auras sometimes without the headache developing - have throughout my 20's. Lately though I sometimes get double vision that lasts for seconds (say 20 or 30). It seems to happen if I turn my head quickly or something irritates my field of vision. Any ideas?
I am going to thedoctor end of month and would like to throw a few more ideas his way
(I already posted about the nausea and tinnitus - thanks for that feedback,anyone else with this?)
Man, Karen, you can come up with some tough questions! You managed to stump the doctors and us too - unfortunately, I know this is not a contest you want to win.
As you already know, lupus can cause pain in parts you didn't know you had - sometimes we experience weird pains with no easily apparent reason. Since lupus can affect every organ, including joints, muscles, tendons, ligaments, bones and nerves, it's not surprising it can be hard to figure out what causes what. I'm assuming your doctor has already ruled out chostochondritis as a cause for your left side pain. Does the pain get worse with movement or breathing, and does eating seem to affect it? And is it more to the front or the back? Kidney infections and kidney stones can both cause flank pain, but so can endometriosis, ovarian cysts, ectopic pregnancy, polycystic ovarian disease, diverticulitis, and pancreatitis.
I think one big mistake women lupus patients make is that we start thinking every symptom is related to lupus, and forget that our female anatomy can also cause problems. So if your rheumatologist doesn't have an answer, maybe a visit to the gynecologist would help.
With the headaches and episodic double vision, do you experience dizziness or vertigo? If you do, putting that together with the nausea and tinnitus might suggest either meniere's disease or a cranial nerve palsy. Nerve inflammation is fairly common in lupus - it often affects the peripheral nerves, but sometimes can affect the facial or cranial nerves. Ocular migraines can also trigger double vision - sometimes covering one eye or using an eye patch helps. Low or high blood pressure, diabetes and hypoglycemia can also cause episodes of double vision, so they should probably be checked. You should also find out if double vision is a side effect of any medications you are taking.
I know these aren't the answers, but maybe these suggestions will help you ask more questions of your doctors.
Thanks again for the great response. You have given some great leads....have no idea what chrostochonditis is but will google. The pain gets worse if I get jostled like in a bumpy car ride or a tap to the side. Its weird for sure. You are so generous with your time.....thanks again. I read your other post on DHEA. I have some but was nervous to take it. I think I will try it (my doctor ok'd it long ago) as the prednisone tapering process is starting to get rough. There is a supplement that another knowledgable lady said we should take with DHEA. I can't remember the name but will post it when I find it. People who have had breast cancer often take it post treatment. Also I have been taking vit B12 (sublingual - under the tongue) tabs for about 2 weeks and my energy has improved alot. I think its contributing.
Have a great day!
Sorry, I should have explained
Chostochondritis is an inflammation of the cartilage in the chest wall, usually where the breastbone and the rib cage meet. It usually causes pain in the front of the chest in the breastbone area, but in some people it can cause pain in the side of the chest, or further down the rib cage, either from inflammation or referred pain from a nerve being irritated by inflammation. It can also cause pain in the arm or shoulder - this is called tietze's syndrome. The pain is made worse by movement and things like coughing or lifting. I mentioned it because it's very common in lupus, but sometimes shows up differently than in people who don't have lupus.
Everyone else has great ideas about what you might have. I just want to mention going to a chiropractor for the eye problem. Maybe it's just that something is wrong with the nerves in your spine. My chiro was a life saver for me. It seems simple, but it's definately worth a try.
mitro valve and lupus
My Mom has the gene for Lupus pasted down from my great grandmother to my grandmother to my mom to me. WOW that is a mouth full. Any way, my Mom contributes her mitro valve problem to lupus. Her heart DR thinks it has something to do with it. I dont know. Just thought I would mention it.