I wouldn't be surprised if there is a lot more that are yet diagnosed. It seems especially if you are diagnosed with fibro or cfs they just can't be bothered looking farther. Its sad but thats the way it is. Took a long time to properly diagnose me and they are still those trying to blame it on fibro or cfs. You really have to be persistent. Hugs and good luck to you. Marilyn

I've been sick it seems since I was in my 20's, I am in my 50's now. I been to more Drs then I can count. Been told it could be this or it could be tht, been given all kinds meds, but never a diagnose. I mived 3 years ago and did research in finding a GOOD Rheumy Dr and I found one!! She is the second Dr to tell me she is sure it is Lupus, and has finally said it has now showed 2 times in my blood work. Yiipppeeeee and booooo I DONT WANT to be sick like this but at the same time it is relieving to finally have a Dr tell me in person what Ive already known for many years!! I am now on Lupus meds and trying to find out what will work. I have fibro to and was told for a long time thats all thats wrong. What it all comes down to is if u dont like the Dr u r seeing find a different one! and mostly DONT GIVE UP!! I am thinkful for this group , they have helped me a lot!
Hugs & Good luck to u Prayers Donna

Hi,
I think that there are many people undiagnosed with many diseases, one being mixed connective tissue diseases, that go undiagnosed and its frustrating and sad. Especially knowing that in our shoes, even if blood results are normal, one pill (Plaquenil) can prove to a dr. that you do HAVE some sort of mctd. It doesnt make a person feel any better if they dont have one. Its pretty safe and has been around for over 50 yrs. If a person starts to feel better after being on it for several months then the puzzle can be put together easier. I really dont understand it myself. I have been sick my entire life and it seems few drs really wanted to figure out what was wrong with me. I thank my current rheumy for figuring out what was going on with me as he was the only rheumy I saw who tested me for APS which was what was making me so sick at the time. Have you been tested for this? It can mimic alot of lupus symptoms and most dr.s dont test it with the proper test. Even after getting diagnosed and feeling better on the drugs I had dr.s telling me I wasnt sick. Its ridiculous how dr.s can be so stubborn and unsympathetic towards people who are sick.

I understand your frustrations and wish you could find a dr. who would at least put you on a trial of a med to see if it helps. Have you been tested for the epstein barr virus? Try not to give up...I feel so bad for people who are suffering without getting the proper treatment or taken seriously. Especially knowing that you can feel so much better on meds if you do have a mctd.
Hang in there

For years I went to different doctors complaining about not feeling well - crying to them. I really felt like there was something seriously wrong with me. I was going to my primary doctors who refereed to a few Neurologists and finally to a Rheumatologist.
The first Rheumatologist diagnosed me with arthritis in all of my joints; gave me prescription and told me to come back in a year. I knew that it was something else so I continued my search with different Rheumatologists. Long story short - I was treated for Fibro and lupus symptoms for another year until I found the right Rheumatologist who started me on Plaquenel and eventually other lupus meds. I was diagnosed as "possible lupus" for a long time before being diagnosed with lupus.
I still haven't gotten any better so I'm going to another doctor next week for another opinion - Dr Daniel Wallace
My appointment can not come soon enough - I can't wait to hear what he says. I love my current doctor so I'm hoping Dr Wallace confirms that I'm under great care and I should feel better soon.
The bottom line is - if you don't feel well than don't give up; keep going to different doctors until you find one that gets you feeling better.
I know I will feel better, I won't give up until I do!!
May we all feel better and better every day in every way!
Blessings and Smiles....

Thanks for the concern and the thoughtful replies from everyone. I really do appreciate it very much.

Not long after I got diagnosed with CFS, I was seeing an internal medicine specialist who ran a great many tests on me, including the ANA test. Lupus was dismissed as a possibility at that time because of a negative ANA. Like most doctors seem to do, he used the ANA as a litmus test for the illness. Since then, I've learned that these decisions made on the basis of simplistic testing like that are not reliable.

I would like to get more tests run, and follow in the footsteps of those who went from doctor to doctor until they found one willing to really look into their case properly. Unfortunately, my financial situation has really taken a bad turn lately, so my funds are extremely limited. Even with Medicare's help, I'm going to have to pick my doctor very carefully. I will need to get the right one the first time.

It seems so straight-forward to me. If there is a reasonable suspicion of lupus, what's the harm of taking Plaquenel for a while? I have friends here on DS who also think it's very likely that they have lupus, and I would really like to see them get retested for it, or put on some Plaquenel. But their doctors don't see things that way.

That's what started me thinking, just how many of us are there? Do we have lupus or a related disease? If I were a doctor and I had patients with butterfly rashes, extreme sensitivity to the sun, Raynaud's, arthritic hands and wrists starting at a young age, and all these other lupus symptoms, I would make really sure I had checked them thoroughly for lupus before dismissing the possibility. I certainly would not do so based just on the Anti Nuclear Antibody test, or any single test. Everything I've read about lupus states clearly that it takes a whole battery of tests to determine if a patient has the illness.

Hi Richie,
Do you have a good relationship or a good dr. that you see right now? Reason I ask is I wonder if you BEG him to try you on a pred. pack, he will try you on one to see if you feel any better while on it. Its a 5 day long dose/taper of steroids which works very quickly if you have a MCTD. You would notice a difference in the way you feel (even if its just a small difference) and maybe that would help to confirm to your dr. that you have some sort of MCTD (causing inflamation) going on. Then, if you feel a bit better, they may try you on Plaquenil on its own. Taking short term steroids is inexpensive, relatively safe, and can help put the puzzle together. You wont feel any better on a pred. pack if you dont have a mctd going on. You may not have Lupus but a similar Connective tissue disease which is also treated with plaquenil. At this point, a diagnosis doesnt really matter. Its getting treatment to see if you get better from it so you dont have to suffer any longer. Like Mataz said, you have to be persistant...Desperate at times. I cant tell you how many times I have cried in my rheumies office because of how sick I felt. Seems like the desperation has made him take me more seriously. Keep us updated and hope you get help/answers soon.
Hugs

Again, thanks for the concern. I do appreciate it.

The only doctor I have a good relationship with is a dermatologist who takes care of my skin cancers. In the UK, dermatologists diagnose lupus, but that's not the case here. She won't have anything to do with it.

She was very insistent that I should see a rheumatologist, but she said she did not know one she could recommend.

I'm going to need to do some research to find a rheumatologist, I'm not going to just pick one out of the phone book like some have suggested. And I also need to look over my household budget to see if I have enough cash to do it. My experience with doctors in my area has been that they are usually incompetent and always very expensive.

I can sympathize with you when you are sick and don't know what is wrong. Alot of times doctors won't put you on anything stronger than short term steroids or Plaquenil, unless you are so sick the risks of taking stronger drugs don't outweigh the risks of the disease. Some rhumatologists will put you on MTX and some won't.

I wouldn't go on MTX unless you are extremely ill with abnormal bloodwork, organ involvement. At your age, most rhumatologists would put you on prednisone because there is less of a risk of long term complications from being on it, like diabetes.

I have gotten a script for Plaquenil without a positive ANA. Most docs will let you try this on a trial basis. Plaquenil is currently the best medication for Lupus. We don't know yet it Benelysta will have it beat. Doctors are still saying stay on the Plaquenil after all these years its been out. It has been proven to help you live longer, and helps prevent problems related to blood clotting by 70%. Since the side effects are so mild you should have no trouble getting a script if you see a rheumy. Take care!

I completly sympathise. I have been ill since I was 8 years old (now nearly 26), and STILL haven't been diagnosed with anything definite. I have been thought to have both juvenille arthritis and ulcerative colitis (and a number of other things I won't bore you with!) but doctors are never really sure because I don't fit the textbook diagnosis. The only doctor that was ever any good was a specialist I saw for Chronic Fatigue Syndrome who said I definitley didn't have CFS but she wanted to find out what I DID have, but unfortunately I had to move before we could investigate any further.
Being both a patient, and working with doctors- I have lost all faitht in them, they really don't know anything and seem to not be bothered about getting a proper diagnosis, only treating the symptoms (and not very effectively at that).
I agree that you just have to keep pushing and seeing different doctors until you find a good one (there are a few out there, somewhere!), but its difficult when you feel so ill and have no energy to do so!
Keep trying and hoping xxx

I'm feeling overwhelmed with the kindness of the replies to my post. Thank you so much, all of you.

Xphoenix, that was such a bad break having to move away from a doctor who really seemed to want to help you. I hope you find another doctor who has your best interests at heart.

I have to admit I have also lost the faith I used to have in doctors after all my bad experiences with them. And it's true, when you are struggling just to cope with everyday life, the thought of dealing with all the difficulties and hazards of a doctor's office seems really daunting. I always seem to wind up with some kind of infection when I go for a doctor visit. And I'm always so foggy-headed that I just don't handle things well in doctor's offices. I envy those who have caregivers to accompany them.

I really hope you are right about that trial course of Plaquenil, Allisonc. My experience with the doctors in my area is that they are not so flexible as that, but I don't want to prejudge them.

This is not just about me, I have good friends here on DS who are in the twilight zone of not being definitely diagnosed. It's not a fun place to be. At least I know some coping strategies now, and that helps me a lot. Avoiding stressful situations is at the top of the list. You don't need a diagnosis to see that stress is toxic when you have a chronic illness like lupus or one of its cousins.

Yes as you have seen many of us have been ill for years with out treatment and diagnose. I now have a "working" diagnose of lupus my bloods show up as very weakly positive I have all the symptoms so my rheumy has me taking 400mg of plaquenil for the past two years.

Keep searching and keep hope. I had been undiagnosed with a chronic daily fever for 19 months and other symptoms. I was finally diagnosed last week with 'Rosai-Dorfman Disease', a rare form of histiocytosis that is attacking my lymph nodes. This answer was the furthest thing from what I had expected but, it has all been worth it in the end to have a name for this thing I have lived with. Sometimes Occam's Razor can be defied. I wish you better health, good healthcare, and peace.

i think i am 1 of the ppl who is yet 2 be diaginosed... i have all the syptoms except the facial rash... i also have fibromyalgia, there are days when i cant even get out of bed, my whole body swells up n i have 2 wear sweat pants or maturnity pants, my knees n hips swell n ache as if my bones want 2 shatter my teath are startin 2 chip at the roots, my hair falls out like no tomarrow, i can b perfectly ok 1minute n the next weak like i have no energy cant focus, the list just goes on n on on... autoimmune disease run in my familly... i went 2 a doctor who did 1 blood test and said it was negative gave me a bottel of pills and sent me on my way... ive been dealing with pains as best as i could so i feel for u, it is very fustrating, n im here if u need 2 vent or just want 2 talk.... 1day it will come 2 lite n we will b better able 2 deal with the pain...

I have been suffering since age 5 with mystery illness. I was hospitalized and unable to walk and move my neck following a virus. I saw rheumatologists, took anti inflammatories, migraine meds, arthritis meds, had weird rashes, allergies and IBS, hypo thryroid etc since childhood. I added endometriosis and high blood pressure as an adult along with GERD. The joint pains I have had on and off over the years have been debilitating. But still no one put it altogether. My Rheumatologist diagnosed me as having fibromyalgia and thinks I have Lupus as well. I swell daily (hands) as well I can barely keep my eyes open. I have a high inflammation factor in my blood but negative ANA. I have yet to talk to him since the tests, but in my mind between these things, malar rashes, and nose and mouth ulcers it seems painfully obvious to me. Im hoping he will start me on Plaquenil just to give it a shot. Medrol packs bring my inflammation down temporarily but only a couple of days at a time. I think this is just one of those things that you just know you have at a certain point when a flare hits. You have this A-HA! moment where you realize what the dr's dont.

Thanks again for the replies, I think I am on the right track in thinking that there are great numbers of people with lupus or something similar, but no diagnosis.

And I agree, ardahk, that you reach a point where you just know that all your symptoms add up to something like lupus. No one knows our symptoms better than we do, the doctors only get a glimpse of what we see day in and day out.

We may not have the sophisticated lab tests to pin things down, but we know when we are seriously ill with something, even when we can't be 100% sure exactly what it is.

I hope we all find doctors who are competent enough to properly diagnose us, but in the meantime, at least we know that we are not some rare medical oddity that the doctors can't ever figure out. There are too many of us for that to be true. I think we just need to find better doctors. Don't ask me how we do that, I haven't figured that out yet. At least we know we are not alone, my heartfelt best to all the undiagnosed.