Took 18 years to receive a diagnosis !

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i have been through a rough 18 years and have just been diagnosed with Lupus. Dermatologists with biopsy of lesions and also sent to Vanderbilt with more biopsy’s and UV light therapy which made rash worse and burn, but no one ever thought of a lupus rash! I was diagnosed with fibromyalgia, migraine h/a and sob but no one thinks of Lupus. I have now gone to a rheum and she says I have a slightly elevated ANA. I have read up on Lupus and even though this Dr may tell me it’s not Lupus but I know after having it for 18 years I know that’s what’s wrong with me but now what do I do for it?

Beginning of the discussion - 9/22/18

Took 18 years to receive a diagnosis !

• Community manager
Posted on

 Hi @Lynn66

I am sorry you have gone through all of that for 18 years! I am sorry also that you suffered from various medical professionals not being aware of your possible diagnosis and making your condition even worse at times... if there is any support in knowing that I suffered from similar medical professional incompetency also - to a different extreme for a different condition. However, I am very glad you are strong and pushing forward.

I am curious, just to understand better... did a doctor make the diagnosis or are you saying that the doctors have not, but based on your symptoms and research you are pretty confident you have lupus?

If the latter is the case, keep searching! Is there a doctor in your area that specializes in lupus, or has more familiarity with it then other doctors?

There was a recent study from lupus.org that about 46.5 percent of people with lupus are misdiagnosed with some other condition during the person's early phase of the disease and that 54.1 percent of people during the initial phase of lupus were told by doctors that there was nothing wrong with them.

So keep pushing. 

Look forward to hearing from you.

Took 18 years to receive a diagnosis !


Posted on

I went through a similar battle.  Numerous missed diagnosis ,  countless ER trips ,  Constant pain and  frustration  Only to be told several times that  One symptom had nothing to do with the other lmao. It took about 7 years for a doc to FINALLY take everything and put it all together and tell me how sorry he was and that it was lupus. I balled my eyes out, not  because of the diagnosis being lupus but because I finally had a real diagnosis that made sense.  Since then it has been several complications, lots of surgeries, lots of medications and a lot of Hardwork But at least I know. I know what’s causing all of it now and that does help. Don’t give up,  like the other guy said start searching for a lupus specialist in your area or even if you have to drive a little farther away do it.  Sometimes you have to make them see it because there still is a lot of doctors  that don’t even believe in lupus.  It’s usually oldschool doctors and they can be mean about it. I’ve had them always end up  referring me to a psychologist because in their mind it’s all in my head.  Don’t give up what you’re feeling is real, what you’re going through is real, believe me I know.  Just remember that just because someone is a doctor doesn’t mean they know everything , they call it a practice for a reason. They are supposed to be forever learning but some of them get stuck in their ways.  Keep searching because you do need a doctor to realize what this is so he can treat you and you won’t have to go through this the way you are  

Took 18 years to receive a diagnosis !


Posted on

I'm new here and find your posts very familiar. I was diagnosed with fibromyalgia in 2001. Dr. said "I would diagnose you with Lupus too, but I really think it's just fibromyalgia".

Above happening about 2 years after being diagnosed with Grave's Disease which threw me into a month long coma 4 months after being diagnosed.

Suffering with pain, eye pain, pain all over, including my joints, skin, muscles, etc...and having muscle spasms when i exert myself (which isn't saying much because I'm always so tired I can't do much, or not for long) I finally started seeing a Neurologist who did numerous blood tests and told me not only did I have Lupus, but also The West Nile Virus.

I've been through so much since, itsi not only becoming a blur ... It's sometimes hard to believe myself..much less the drs I've seen in the ER or new drs if i move.

I'm tired. I'm in severe pain. And can't get any physician to hear me and treat me so I can function day to day.

I'm disabled due to COPD. I know Lupus is a huge part of my inability some days to just take a shower, much less, go to the Dr, the store, visit friends...whatever. 

I take Prednisone which helps my COPD and Lupus. I haven't had pain medication since last December, or my anxiety medication since February. Drs here want me off of everything I don't need. Which blows me away. I hate pills, but I hate to suffer much worse. I'm here to learn, to meet people that can relate to what imIgoing through and to hopefully find out what I need to do so i can have some kind of quality of life.

I'm in Arizona now, should've never left Texas, but I'm here trying to care for my mom as well. Any advice, suggestions, opinions are more than welcomed.

Took 18 years to receive a diagnosis !

• Community manager
Posted on

@Heavenbound813 I am sorry to hear everything you are going through and have been through. Unfortunately it seems many people suffer from improper diagnosis or failure with diagnosis. @Rosiebella‍ stated perfectly, that is why they call it a practice, unfortunately.

Have you found a good and caring doctor for your in Arizona? 

How is the hyperactivity of your thyroid from Grave's disease? 

 

Took 18 years to receive a diagnosis !


Posted on

Hi Lee! Thank you for your comments. No, i haven't found a good dr. Quite frustrated in fact. To the point of not seeing specialists at all for any of my needs because i feel like they're not addressing any or some of my needs. 

My Grave's Disease now is hypothyroidism having to take radioactive iodine caps in November, 2000. Something i wish could've been avoided. It is what it is, hehe.

Actually, I'm getting so sick that I'm leaning toward hospice care and at the very least my basic needs might be met and i'll finally be comfortable until the end.

Thanks again for popping in! ?

Heavenbound813

Took 18 years to receive a diagnosis !


Posted on

Hello! So after 3 years of having spot on symptoms  to lupus- I still don’t have a diagnoses - simply because my ana is negative. Doctors won’t diagnose me without that. I am struggling in the meantime . Even a dermatologist said my rash is a Malar rash and can’t believe I am not diagnosed. So frustrated and feeling alone and sick. Has anyone delt with this??? 

Took 18 years to receive a diagnosis !


Posted on

Hi! So sorry to hear of your frustrations. I have several diagnoses... If it were only one, I wouldn't wish any on anyone.

I have Lupus. Since 2004. In 2007 I acquired West Nile Virus from a mosquito from WNV... Sarcoidosis. I just thought I was living a nightmare, hehe. As the years roll on, of course, the worse I'm getting and several more diagnoses.

I've had many frustrations with Doctors myself. I'm an RN, so you can probably imagine. I've been disabled for 5 years, unable to work. The nightmare I thought i was living? Ha! It was a holiday compared to now. 

I believe i may have been better off not knowing as much as i do about medicine. Searching for answers is exhausting. Learning to adapt and live with what is happening to you? Inevitable. 

So really...how important is that diagnose anyway? Keeping the annoying symptoms at Bay is crucial. Take care of your symptoms so you can live the best life possible. See the Doctor when necessary, for sure. When they can't find the answers, (after all... Physicians PRACTICE medicine) as do most people...use the cream, vitamins, minerals, relaxation techniques, etc. whatever helps you feel better...live your life to the fullest!

Much love!