Hi all! Hope everyone is doing well!
I am so frustrated. I cannot seem to get a straight answer from my doctors. I’ve seen 5 doctors (pcps) and 1 rheumy. ALL of the pcps have stated they think I have Lupus, and the rheumy I went to turned out to be a crock (literally…o_O), however no one seems to want to give me an official diagnosis.
I am currently searching for a new pcp. The one I have now just does not take the time to hear me out and seems to get frustrated when I “rush” her, which IMO, I do not.
I have been in pain and suffering from several symptoms of Lupus for about 10 years but it just keeps getting worse and worse. I used to be quite stubborn when it came to going to the doctor. I convinced myself that I felt the way I did because I wasn’t eating like I should, I was just a wimp etc…I made so many excuses for feeling like I did. Now that it’s worse and I’m seeking answers, no one seems available/able/willing to give me any!
My bloodwork usually comes back normal, but there have been several times I have had positive ANA tests and other abnormalities. I have a butterfly rash almost constantly, extreme photosensitivity, arthritis (mostly knees and hands), brain fog, extreme fatigue…ugh, the list goes on. I’m just so tired of this. I want to be able to call a spade a spade and move on. I’m also worried if I don’t start treating this soon it’s just going to be really bad, given the rate it’s worsening.
I’m sorry, I just really needed to rant. Thank you for hearing me out. <3
This story seems to be on re-run. I wish doctors would tune into this show! Can we get a reality TV show started here? We will call it "We know what is wrong- why don't our Doctors?" AHHHHH ! They are so unwilling to help people it makes me want to scream. I know they have guidelines to follow- but come on! Why do so many people have to hit rock bottom- and still dig deeper for some of us- before a doctor says- yep. It's lupus. Forget the stinkin' name. Call it "wecan'tcallitlupusbutweknowyouaresickandwewanttohelpyoufeelbetteritis" and just give us the medicine and treatment we need to feel better! I don't care what it's called-just treat it!
I truely feel for you and all the others who I know atare various stages of this battle with their own doctors. Don't give up.
((HUGS))
I just read another post quite similar! Its terrible it has to be this way. I get it, I do...its hard to understand and diagnose an "invisible illness", but for the love of all things, its REAL! I'm not crazy and I do NOT need to see a psychiatrist (for my pain, anyway). In this day and age with all the advances in medicine one would think it wouldn't be this difficult. I'm so tired of being looked at like a crazy person when I show my list of symptoms but have little to "validate" it according to blood work.
We truly should have a show about this... o_O
<3
cassie40 said:
This story seems to be on re-run. I wish doctors would tune into this show! Can we get a reality TV show started here? We will call it "We know what is wrong- why don't our Doctors?" AHHHHH ! They are so unwilling to help people it makes me want to scream. I know they have guidelines to follow- but come on! Why do so many people have to hit rock bottom- and still dig deeper for some of us- before a doctor says- yep. It's lupus. Forget the stinkin' name. Call it "wecan'tcallitlupusbutweknowyouaresickandwewanttohelpyoufeelbetteritis" and just give us the medicine and treatment we need to feel better! I don't care what it's called-just treat it!
I truely feel for you and all the others who I know atare various stages of this battle with their own doctors. Don't give up.
((HUGS))
Hello SweetNovember,
Tell me about certain specialist's who just don't bother it totally annoys me...you don't need to have positive bloods to still have Lupus or an autoimmune disease and if you show 4 symptoms out the 11 criteria they should be treating you plus you've said sometime your ANA as come back positive..it could be on the times they're rechecking your blood especially if you are Lupus related it fluctuates with our blood and causes false readings sometimes....that's why so many member's and people go for years until something shows but suffer in the meantime like yourself.
Especially with what you've said the butterfly rash, foggyness, Arthritis and photosensitivity is a large issue also.
Carry on ranting because we don't we'll all go completley mad at times if we don't lose off stem.
((Hugs Terri)) xxx
Cassie
I too have normal blood work, but I have a lot of the symptoms for SLE. I did have a positive biopsie for tumid Lupus( skin lupus. I can’t get a diagnosis of SLE, but I know it is there! It can be very frustrating at times. Most of my treating doctors tell me all the time that they know I have SLE but I can’t seem to be diagonsised. I just stop fighting it. I just make sure I have a good rhumy that treats me. I have only been given merdol dose packs for my flares. They have tried me on several other lupus meds but I keep having too may side effects from them. So the meds can be a problematic too! Just educate yourself on the subject matter which will help guide you with this disease. That is what I have done.
Best of luck and take care!
From what I understand alot of doctors are like that. For me personaly it was very different, but lots of ppl here and in my local support group have that issue a lot. If this many doctors seem to think you have Lupus and if your labs have come back looking like it, I just dont understand why they are so stupid about saying ok u have lupus I am putting you on this..... and we will see u in 6 weeks to see how u feel.... Plz anytime u need to vent do so! Someone will always have something to say to make u feel better!