Posted 7/13/2014 12:38 AM (GMT -6)
I'm sorry that you're having such a difficult time with your health, especially at such a young age. I like Joy am going to give the exact same advice, you need TO SEE a DR ASAP. I totally understand what you're going through and I can say this to you that you're not alone. All of us on this forum have faced major challenges.
You're lucky that your got a diagnosis at your age and treatment. I started showing some signs of SLE when I was like 17 and it was ignored. I got married at age 20 and started traveling with my hubby who was in the military. Well, when I was 23 years old (by this time was really sick) and I had an Air Force Internal Medicine Doctor tell, "you know I think you might have lupus.
They did NOTHING for me and it took them 13 years before they FINALLY said YES I do have SLE and started treating me. I believe that's why I'm so sick and nothing works for me. I've tried everything but Gold Injections and NOTHING has stopped my flares or progression of my disease.
The reason I tell you this is that lupus can affect your heart and once damage happen to our organs it's almost impossible to reverse the damage. I understand that you like and trust your cardiologist, but if he's not going to be back until the end of the month, please reconsider and see a different cardiologist. I've had both pericarditis and endocarditis, both of these conditions, IF, left untreated can be VERY dangerous to the person with the conditions.
Now, I'm not saying this is what you have, but if two EKG's weren't normal and then you mentioned not being able to hold your help up you need to be seen ASAP. As far as seeing a neurologist some doctors have a sliding scale for the cost of appointments. It's based on your income, or some Doctor will see you and allow you to make payments.
I truly believe being seen sooner rather than later is very important with the type of symptoms you're having. I totally get that you're feeling overwhelmed with everything that's hitting you and how you feel as if no understands it, and that you're the only one experiencing stuff like this, but you're not.
Most of us here have gone thru so many symptoms and issues. Some of us have been told multiple times well it's in your head and you need therapy. Or we're lazy, or if we'd lose weight, or eat better. I understand how you felt with they sent you away from the ER w/o treatment. That happened to me so many times over my 13 years. It happened so much so, my daughter who is 21 is greatly affected by it. She refuses to go to the doctor even for a yearly physical.
Please, go see a Dr ASAP, and let them figure out what's happening with you. You can come and vent here everyday if you need or ask questions of us. You haven't mentioned if they are giving you any medications to control your lupus, what are you taking for your Lupus? If you're not on medications you need to be, and if you are on it, you may need an adjustment. It sounds like you're flaring and your medications aren't working. I'm not a Doctor but my experience would lead me to believe that.
Hang in there, we're all pulling for you here and this is a great forum we help each other all the time here. I hope you take both Joy's and my advice and go see someone today for these current symptoms you're having. Please let us know how you're doing and if you saw someone and what did the say.