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View Full Version : Help Please, Does this sound like lupus to you??



graphicsgoddess
03-29-2009, 12:12 AM
Hello, I new to this place. I came here to seek answers and make friends. I have not been diagnosed with lupus, but for all my research it seems to be the only thing that makes sence. The drs said I have different symptoms of different rhumatoid diseases and they would have to see me "go through it a few more times to be sure" HOW CRAZY! It sucks. But from the looks of it, allot of people on here are trying to figure this out for themselves too... so.. anyway.. here is my story. Its long, so if you want to take a minute to get a drink... or use the bathroom.. haha =).......


Im 28yr old female. Last year one week I started running fever of 104, and could not breath and had excruciating chest pain. After a week of suffering on the couch (because of no health insurance) I finally went. They found a massive pericardial effusion, severe anemia, and a moderate pneumonia. I had pericardial-centisis, (were they took the fluid from around my heart and drained it) and sat in ICU for a few days. Then I started running 104 fevers that would not break. I spent 19 days in the hospital, 300,000 in medical bills without insurance. Im fine for a few months, then I start getting pains, running fevers, and go back into the hospital. They find no heart issues this time, no inflamation markers, or strange blood work, only that im slightly anemic again. This goes on one more time with the same results.Fast forward two this year. I get the same pains in the chest, with new pain in the left side that is constant, dull and achy. A few times I have woken up screaming with sharp stabbing pains and my heart racing. Fast forward a few more months. Im at my new job. My knees start going berzerk, along with my other leg joints, and swell and turn cherry red, with blotches. I run mild fevers on and off and seem to have problems getting enough air (not like Im not breathing well, more like the air isn't working like it should) Under my arms feel like someone beat me with a baseball bat, very tender hurt to move. My left arm starts to develop a harsh sand-paper feeling area on it, with no color change. It will not go away, its not dry skin. The skin itself feels like sandpaper and its slowly growing in diameter. Every joint in my body pops and cracks when I move. I get what I think is some kind of HORRIBLE heat wave and then my chest and neck by my glands turns bright red and and I pee my pants a little. I go back to the hospital, with more chest pain, and they find a large soft tissue attenuation on or near my thymus. They said it could be thymic hyperplasia or a mass and want me to check for further testing but I dont have health insurance and I can not afford another battery of tests
As for my blood work,....My inflammation markers that are sensitive for my heart come back high, but there is no pericardial effusion this time. The chest pain continues. The Dr's said they would call me if anything was found....and I havent heard anything. Oh yeh,... and at some point in all this, I was partially color blind for about two weeks in one eye. Then it went back to normal. I have had **evey** test medicine offers in my state, besides bone marrow biopsy and the pill you swallow. I am at my wits end. I have a bipolar fiance to watch after who is not doing well and I can not do so this anymore. I need someone to help me. Also I noticed sometimes my stomack swells very quickly and even my little sister noticed it..it becomes tender when a little pressure is applied.. I have cravings for nothing but meat and potatoes and rice.. I am not interested in leafy greens, or pastas.
I often get a very sharp pain in my gut on the top left side.
I also get horrible stabbing pains right were the bone meets in my elbow and especially on my left leg's knee (even though the right leg is the one I blew out playing soccer)
Oh and one more thing, often when I wake up I see a HUGE dandelion like spider looking thing right above my face... and it does not go away right away. Sometimes it takes like 5 minutes.
In the last five months my mouth sheds ALL the skin in it, and it comes off in HUGE white slimy slabs, like Im a snake or something.
I am at my wits end here. I just dont know what it could be. I feel like this is rouining my life. I dont even know how to manage it because they dont even know what it is. Over the counter Anitinflamatories do not work anymore. Even with a slightly stronger medicine the hospital perscribed for me I can still feel the presure and dull ache in my chest at all times.
right now as I enter this I actually have a mild rash on my face that burns... i know that is called a butterfly rash,..but its not bad at all.

Im kind of scared that the mass has grown, as my chest pain is constant, and goes from dull and achy to intense, kind of like the feeling you get when you have a toothache.. except in your chest.

Does this resemble anyones experiances with lupus? DO you guys think that this is what it might be? I know no one is a dr around here.. but any advice, or help would be great. I dont have insurance, and was laid off, and will more then likely be loosing our home soon, so going to the dr is not an option, unless the pain gets to be to much to handle.

Thanks, and please forgive my crappy spelling=)

rob
03-29-2009, 04:43 AM
Hi Graphicsgoddess,

My name is Rob, and I was diagnosed with Lupus five years ago. I'm 41 now. I took a bathroom break, grabbed a drink, and dug into your story. You have quite a list of symptoms. None of us here are Dr's, so I'm sure you understand if we can't give you any sort of official diagnosis. What we can give you is guidance based on our collective experiences. Many of your symptoms are typical of Lupus, and some are not so typical. But, Lupus affects everyone differently, and is as individual as the person who has it. No two people are the same.

I'm wondering, with all the various Dr's you have seen, have you seen a Rheumotologist? They are typically the specialist who is able to come up with a Lupus diagnosis. Many times with people who are suspected of having the disease, a rheumo will prescribe a drug called Plaquenil. It's probably the single most effective drug used to control our symptoms. It's pretty well tolerated, and works well for many. It can take up to six months to work, and you have to see an opthamologist to monitor for eye problems, but it's pretty effective overall. Some people are prescribed it to see if their symptoms subside, even though they have no solid diagnosis. You could ask your Dr/Rheumo if this is possible.

Also, have you ever noticed if any of your symptoms are associated with being out in the sun? Most of us will go straight into a flare if exposed to the sun. A flare is a sudden onset of symptoms, much like what is happening to you. Something you can do almost for free, that is very safe, is start wearing sunblock, wear a hat, and avoid the sun as much as possible. If you do indeed have Lupus, the sun could be causing your symptoms. If you don't have Lupus, there's no harm done from avoiding the sun.

I hope we can help you find the answers you need. We have many members here who are in "diagnosis limbo", so you are in the right place. Anyway, welcome to our group, and please make yourself at home.

Rob

mountaindreamer
03-29-2009, 08:54 AM
hi again graphics....

thanks for all of the personal information. so sorry that you are going through this. yes, chest pressures, joint pains, butterfly rash, are all symptoms that many of us suffer from. the chest pain is very typical, and when we get our hearts checked, they are ok....so thankgoodness that the heart muscle is strong.

i do know that you need to see a rheumatologist for diagnosis and treatment of lupus or other auto-immune diseases. however, i just don't know how to accomplish this without insurance. Does the hospital possible have a patient advocacy department that might be of assistance.

like rob said, avoiding sun light, florescent lighting is crucial to managing flares. There are no cures, only treatment for symptoms, and plaquenil and steroids are the most common....

hopefully otheres will be along who can help you find a way to get medical attention....it is not fair that you have to lay on your sofa and suffer.....

ewillies
04-02-2009, 08:17 PM
I am sorry for the misery you are going through. I know you do not have insurance but your simptoms sound critical and I am sure you must qualify for medicaid. PLEASE GO TO THE ER AND DO NOT LEAVE WITHOUT CARE. Morality dictates that they assist you. My wife had most of the symptoms you are exhibiting.

That said, I know the insurance issue is a problem.
Getting insurance especially if there is a pre-existing condition is difficult. I just created a website in which I am trying to provide real life stories of problems most of us have getting affordable healthcare insurance and medical service. We will be submitting these stories along with others from many other sites to Congress and other organization to get our country back on the right health track. Please visit our site at http://singlepayerhealthcarenow.com/ and email your story. We really must make health insurance & healthcare simpler.

ewillies
04-02-2009, 08:18 PM
Hi Graphics,

I am sorry for the misery you are going through. I know you do not have insurance but your simptoms sound critical and I am sure you must qualify for medicaid. PLEASE GO TO THE ER AND DO NOT LEAVE WITHOUT CARE. Morality dictates that they assist you. My wife had most of the symptoms you are exhibiting.

That said, I know the insurance issue is a problem.
Getting insurance especially if there is a pre-existing condition is difficult. I just created a website in which I am trying to provide real life stories of problems most of us have getting affordable healthcare insurance and medical service. We will be submitting these stories along with others from many other sites to Congress and other organization to get our country back on the right health track. Please visit our site at http://singlepayerhealthcarenow.com/ and email your story. We really must make health insurance & healthcare simpler.