I am so frustrated with my doctors. I have been to so many doctors and I am no closer to a diagosis. I've had 2 pheumatoid profiles that have both been positive. My white blood count is very high and I feel like i've got the flu all the time. I have a reoccurring rash on my face, neck, and groin area. They did a biopsy and I am waiting for the results. Why can't they tell me if I have lupus or not? The rheumatologist has mentioned sjogrens disease and behcets syndrome but he can't give me a definite diagnosis of lupus or the other two mentioned diseases. I have constant fever, headaches and not to mention I have had unexplainable and uncontrollable seizures for 3 years now. As you can tell, I am so frustrated and confused. I did have one drug that helped my seizures but it lowered my platelet count so much that I had to be hospitalized for petechiae rash. I was a middle school teacher and had to retire due to my seizures and now I am confined to my home. I just want to feel better. Does anyone have any advise for me? I have not been started on any treatment yet except just topomax for my seizures and pain medication for my aches and pains of migraines and joint pains and of course, I am on antidepressants and anxiety meds and meds for mitral valve prolapse. Any encouraging words out there? My eyesight is terrible. I need to go to an eye doctor because my vision is so blurry. My eyes hurt 24/7 and are so dry. The first doctor that found I had a positive blood test for lupus was my orthopedic doctor. I was going to him due to a torn rotator cuff in my shoulder and ruptured discs in my neck. I had a series of cervical epidural injections to my neck which helped somewhat, but I have been really sick for about a month with something like the flu which started with a rash which the doctor said was the shingles and then went into the flu. I thought I was dying. I am better now but still have low grade fever and aches and pains. Please help.
I too have had many positive tests come back. I am going to yet another specialist in September. My blood work is all normal. My ana has come back positive for 5 years in a row now. I feel as if I need to stretch every minute of the day. My eyes and mouth are constantly dry. Never really bothered me though. Have had alot of abdominal problems, small spot on kidney, ect. Tested negative for all known disorders so far. Being re-tested again. Was at Cleveland Clinic. All docs (so far) have stated it's depression. I am constantly cold, fingers go numb and tingle. Ankles are "sprained" All I am on is something for sleep and something for depression. I wake up in the middle of the night with a stiff neck or legs and arms numb. Just from sleeping. I posted on here for a doc's opinion and I have not gotten anything yet. Good luck to you. I know how frustrating this can be.
Can you ask your doc to try to put you on lupus meds just to see if it will work? Maybe you're doc is worried that giving you Lupus meds might have a conflict with other medicines you're taking so he really wants to make sure.
I say if you're not happy with your doc, change him/her. My eyesight is crap too and I have Lupus.
Pretty much there's two kinds of medicines they give you for Lupus, prednisone (steroid for anti inflamation that you take preferably for short periods of time, it works right away) and plaquenil which takes months to kick in and it works more on preventing a flare up. They say Plaquenil can give you glaucoma (eye illness due to high pressure).
To be honest, having predinisone and plaquenil is no walk in the park. I don't feel any better after being diagnosed. The medicines give you crappy side effects that have made me stop taking them.
The best feeling in the world is getting a steroid via IV. OMG, i feel like a kid again! My cheeks get fat and I look like crap but I don't care, I feel good when it's via IV. The pills, I find, barely work. Also, I've noticed pills from certain pharmacies give me terrible side effects compared to the same prescription I got filled at a different pharmacy. wierd huh?
My suggestion is, if you're in pain...ask the doc for steroids anti-inflammatory meds. They give that to everyone for almost any reason. If you hate your doc, change docs. Keep trying. Hang in there.
Thank you. Do you find that weather affects your pain? I do. If I don't keep (or try to) my feet and hands hot, I am worse. All this doc right now knows is that I definitely have an autoimmune disorder. that is why I am seeing two other specialists soon. From what I understand, one of them is like the show "House". Only this docs bedside manner is better. But, she says that he doesn't take a case unless he sees there is something there. We'll see. I had just moved here to this state a month ago. So, I have seen about 40 docs. Literally. I have been on prednisone and it did help for a while. See, that's the other issue...My body metabolizes meds and I get used to what they are suppose to do, so they stop working. Yea, being sick really bites. On top of all that, I am dealing with a husband who is a veteran with TBI and PTSD. Along with other physical injuries. And I have family members who are in denial of me being sick. So, when it comes to being around others, until I am properly diagnosed, I have to suck it all up and act as if nothing is wrong. That is one reason I joined this site. I have people to talk to who understand. Thanks again for the info. Katch