Hi, I'm from the States and I have SLE. I've had a stroke, I almost died from Pericarditis, 6 doctor's said it wasn't my heart and sent me home. Then the 7th doctor rushed me into emergency surgery and saved my life. Two weeks ago I found out that I have several masses on my liver I see an Oncologist next week. The next day they started infusion with Methylprenisolone that lasted for 5 days and then my heart rate dropped along with my blood pressure, they admitted me to the hospital. Then I started to feel good then they gave me Nuclar medicine for the Stress test and the same thing happened all over again. No one could tell me what happened to me I forgot I also was dizzy.
There's so many other things that are bothing me, that its scary. I've had a headache for six days, I haven't slept for a couple of days. Someone please help me,figure out whats going on. Thank you
Lupylulu
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lupylulu
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Lulu....so sorry for your pain..I hope someone can help you. I will say a prayer for you...My impression of the nuclear test is that your body attacked what they put in you thinking it was something alien. Did your doctor know you had lupus when they ordered this test? Are you in the hospital? I was getting a lot of headaches and thought I would have a stroke and started taking natto k enzyme to prevent sticky blood. My headaches are gone. I can't say with certainty that this would help you with your headaches, just sharing what works for me. I know lupus is tricky, boosting your immunity for repairing damage, but not too much that your body starts becoming inflamed. I drink a lot of ginger tea for anti inflammatory aid. Please take care and I hope you can get help from others on this site and your doctors....
Thank you very much for your prayers and no I waa released last week from the hospital and my doctors knew I have Lupus. I'm going to try your ginger tea which sounds great. You've given me a lot to think about. And I thank you from my heart, may God be with you. Lulu
Where in the states do you live? I live in NYC and have a good rheumatologist who is a lupus specialist and is knowledgeable about APS. It's frustrating to be sick and not have doctors who are sympathetic. I have slowly switched all my doctors to one hospital so that all the specialities are connected by computer and can all see what is found by others and can easily contact each other. I wish you well. Also, do you have support groups near you? NYC has a wonderful support group that meets twice a month. They can help you connect with groups in other cities. lupus.org/newyork
God Bless you Loretta, I live in the Midwest. Evanston, Il and Cassopolis, MI. Thank you for everything and your time. I'm going to look into support groupsthank you again so very much and God bless you
blessings to you also. I don't get to the support group often but it really helps me when I do. I had a stroke on March 1st and was diagnosed with APS with an INR of 1280. They constantly monitor my blood to see if I'm developing Lupus. Each step of this journey requires support from people with our conditions. When others don't understand, this group and face to face support groups help so much. When I feel like I'm overwhelmed, they help me so much as you have. Have a great day. It's a beautiful day here in NYC 50+ degrees.
Firstly let me just say that I feel for you, it must be so very frightening having to go through what you've just been through.
Secondly, you asked about whether there is a different kind of help in the UK. I'm not the right person to respond given that I've not been under the care of a U.S. doctor but I can only imagine that although the two systems are somewhat dissimilar in certain aspects, generally they are both subject to the same way of thinking of the medical profession. And by that I mean that doctors everywhere can make mistakes and misdiagnose, so wherever you go you'll find that. The trick is to be an informed patient, I.e. To know as much as possible for a lay person about one's afflictions and to then work with the doctors to get to the right treatment.
Sounds good, doesn't it? That may indeed work when you've already been diagnosed, you know what you've got and you're keeping on top of it. It doesn't really help when you're in an emergency situation, as you have been with your heart. In that case there is little to do but follow what you're being told. In your case you even went to 7 doctors, so you have done everything possible to take care of yourself and you still didn't get the right treatment in time. The thing about pericarditis is that when it is in its incipient phases it is easy to miss. As I understand it an ECG machine may not flag up a pericarditis when there isn't enough abnormality in the curve. When I had my pericarditis the ECG machine indicated a Normal result but thank to an eager junior doctor who actually looked at the diagram instead of just rely on what the machine said, saw the abnormality and diagnosed me. As I was diagnosed early on, I was able to control it with antiinflammatories within few months without any scarring of the heart. In your case, as you were being passed from doctor to doctor your pericarditis was worsening and by the time you saw the 7th doctor it got to the point that it became visible.
Have you been given any medication for the pericarditis?
You mentioned you've just had a stroke - I agree with the previous responses about checking for APS/sticky blood. A blood test would be able to determine if you've got it and you can then be put on blood thinners to avoid any future strokes.
About the liver - you mention that you're going to see an oncologist. Have they already confirmed that the masses are malignant? Many people have benign cysts in their liver, so don't lose hope. If you want more information or support on the liver issue, try the British Liver Trust community on healthunlocked - it is a very useful forum and you can raise all your concerns there, those people probably have been through it all.
I know everything must feel overwhelming right now. Just take it one issue at a time, one day at a time - let tomorrow take place tomorrow, not today.
Good luck at the oncologist and let us know how you got on.
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