Undiagnosed Symptoms Community
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Avatar universal

Think I have lupus or similar auto immune disease

I'm a 21 year old female. In early march 2011 I contracted mono. I had a sore throat with swollen white tonsils, and all the normal mono symptoms and then some. Severe fatigue, headaches, fever, muscle aches chills. I also had pain in my right side which at the time I thought was pain form an enlarged spleen. Not realizing that the spleen is on the left side. Later I began having the pain on my left side which I then found out was the location of the spleen. I also developed severe back pain at some point which I later realized was my kidneys. Along with all that I had joint pain in my shoulders and hips. It was very painful for me to try and lift up my arms. After about 6 months I started to recover and get to a point where I wasn't quite as exhausted. I was 19 years old and quit going to college because of my extreme exhaustion, but my parents wouldn't have me doing nothing so the made me get a job. I think this was the turning point. I got a job November first. I was completely normal until around December. I was working 4 to 5 days a week 8 to 4 which I was not used to. All the symptoms came back, even more intense then before. Minus the white tonsils. I the joint pain was a lot worse and ported much in most of my joints, but it was particularly severe in my knees. I would find myself struggling to bend my knees, while at the same time not being able to straighten them completely. They were extremely stiff, swollen hot and they would pop, crackle and lock with every step. I started seeing. Rheumatologist in August (there was a very long waiting list) and I started taking plaquenil. I never got a full arthritis diagnosis, I was told it looks like early rheumatoid arthritis. That's the short story. It's been 3 years since I first started having these problems and I haven't gotten a single answer from my doctor other than " your a complete mystery". But I strongly believe that I have lupus. My doctors say that thee is not enough evidence in my lab work, but I have a positive Antinuclear antibodies and protein in my urine. Here's a list of my of my symptoms. Everything I could think of.

Extreme exhaustion
Arthritis (apparently)
Puffy face, especially the eyelids, also hands and feet swell when I sleep
Extremely sore weak muscles
Weight gain
Constipation (almost always one or the other)
Vertigo (often)
Organ pain (or upper abdominal pain on both the left and right sides, plus back under the ribs)
Sensitivity to light (eyes especially, but also the rash on my face)
Eye pain (the muscles hurt when I move my eyes)
Malar rash (it is prefect butterfly shape, though my doctors are skeptical)
Lack of appetite
Never rested regardless of amount of sleep
Dry mouth, nose, eyes (probably from medication but still)
Hoarseness (from Hashimoto's)
Sore throat (probably Hashimoto's too)
Muscle spasms
Pateachia (doesn't happen very often but happens for no reason)
Extremely tight tendons that crackle and pop
Hair loss (symptom of Hashimoto's but also lupus)
Mouth sores and ulcers
Raynaud's disease (undiagnosed, I hadn't even bothered to tell my doctors, they ignore everything I tell them.)

Now I'll make a list of the 11 symptoms used to diagnose lupus and put a star *  next to the ones that I CLEARLY have.

*Butterfly rash (I have photos)
*Light sensitivity (that worsens the rash)
*Mouth sores or ulcers
*Joint inflammation
Inflammation of the lining of the heart or lungs(I've never been checked)
*Urine abnormalities (proteins and cells)
Seizures or psychosis
Discoid rash(possibly, I was told the rash was sweat related)
*Positive ANA test

I was told that the proteins and cells in my urine were from a bladder infection and I was given anti biotics. I have been told this many times and I have never had a UTI or a bladder infection. I was told that the antibiotics would help my kidney pain and that it was part of the infection. -_-

I was also told that because the fact that perfectly healthy people can have a positive ANA test, it didn't necessarily mean anything. My response was "but I'm not healthy, something is obviously wrong. I have seen a total of 4 doctors so far. I'll be seeing my third rheumatologist in June hoping to finally find a doctor that doesn't blatantly deny/ignore all of my symptoms. Is there anyone out there that has heard of something like this, or has any ideas of what I can do to get some sort of diagnosis? Maybe I should see a doctor who specializes in lupus?? I've heard people go years without a lupus diagnosis.

Also I forgot to mention I've been diagnosed with Hashimoto's disease. My dad who is a surgeon, suspects that I have mixed connective tissue disease, or some from of it or something similar. But that is not his area. He is an ear nose and throat specialist. He has tryed to help me in every way he knows how.
38 Responses
Avatar universal
Sorry for all the typos. I've been writing a lot. This is my 3rd try writing this, I had to cut out so much information.
Avatar universal
Also I have photos of the butterfly rash, and the raynauds, and the petechia. If anyone wants to see.
2143641 tn?1396681743
unfortunately you must take into consideration the idea that medicine in its state of art, can't do much about your issue.

you know Dr. House's line "it's never Lupus", it's a bit more than just a joke.
Lupus isn't a disease with a clear etiology and consequentially a functional treatment, so what would you make with a diagnosis of Lupus?

know that your immune system will learn and change with time, it can be altered by the environment you live in and even the things you eat. you can't do a lot more than working on that.

Avatar universal
All I want is to be able to tell people this is what's wrong, this is the reason I am so limited. Instead of spending my life telling people my life is the way it is because of some unknown disease. Nobody takes my problems seriously. Lupus is serious. When you tell your boss at work that, you are limited because do the lupus flares there is understanding. But when you tell your boss at work you are tired and in pain, there is no understanding. That a I want. I want a explaination for my pain instead of empty excuses that no one can understand.
Avatar universal
People look at me and say your young your healthy, this is how you should live your life. But I can't live my life the way normal people do. I can't walk down the street without needing to take a nap, I can't play with my dog, I can't ride my bike. People look at me as a lazy person making excuses for themselves, not as a person with a life affecting disease. I understand that having a diagnosis doesn't change anything, I'll take the same medications. My life will be the same, but people will understand that I have a life affecting disease instead of being treated like I'm not any different than another 21 year old.
2143641 tn?1396681743
I understand how you feel, I've been experiencing a similar situation. I don't know exactly why people do that.

in the end you can't change their mind. all you can do is to chose who you want to trust but first you must trust yourself which is the most difficult part. good luck... .

Avatar universal
Thank you. I know that what other people think doesn't really matter. But it's nice when people say oh yeah I know how you feel, my buddy has lupus. Or something like that idk. You start to feel like there isn't any hope. Your own family starts to look at you like your just making it up. People think if the doctors can't see what's wrong you must be making it up. I go to work and people ask my why I'm limping. I don't even know what to say.  A week ago my knee was so swollen and stiff I had to walk around in crutches. I came into work in a wheel chair trying to explain to my boss that I can't move my leg and I can't even come up with an explanation why. My doctor gave me a note for that week off at work and just told me "it's a mystery". It's rough knowing that the thing that has ruined your life and taken away everything is a "mystery". The worst part is that it's nota mystery. Lupus is a perfectly good explanation that explains pretty much all my symptoms, And the ones it doesn't explain are explained by Hashimoto's.
2143641 tn?1396681743
if you had a name for your illness people would probably change attitude but keep making the same decisions about you.

the healthcare is done like that, it is administered and regulated from the top, one-way.

research is done at the top and when it's good enough (or good enough to sell drugs) it is addressed to the bottom of the pyramid.

if the doctors won't go for a diagnosis or another there is probably a reason. what are they saying is missing? do you still have that "butterfly rash" around the nose?  consider that all these autoimmune syndromes have something in common, some are very similar.

when the causes are unknown, the treatment non existent, you can call it Lupus, Jason or Mike but it won't make any practical difference.

Avatar universal
The doctors haven't actually said anything is missing. They just say that my test results aren't showing anything. I have a positive ANA but it's a 1:40 tilter which isn't specific enough. From what I've read 30 percent of people well I have a positive result even if they are completely healthy. My rheumatologist says it's positive because of the early rheumatoid. It could also be positive because of the Hashimoto's disease. So I do have autoimmune conditions, that's all it prove and no one is really arguing about that. They are just saying there's no "proof" it's lupus. One rheumatologist denied I had any positive results at all even though the tested say on them positive. The other rheumatologist explains everything away with ********. Like the protein in the urine. I have 2 different tests one urinalysis says I have trace amounts of protein. I think referring to the cloudyness. Even though it's labeled as trace it has a star next to it showing its abnormal. The other test shows I have very high levels of protein. From what I have read the normal amount for one sample is 10mg and mine was 170mg. Yet I'm told by my doctors this means nothing. They completely ignore the fact that I've been complaining of kidney pain for more than 2 years. They all say it's not there specialty. No one wants to address the problem or refer me to a  nerphorologist. As for the rash I don't have it 24/7 only during a really bad flare up, or if I have been under uv rays from either the sun or fluorescent lights. I see it on my face every time I come home from work. It becomes more apparent from the light exposure and also from overworking myself. It's faint but noticeable enough that my aunt (who is also a doctor) noticed it before I had ever known what one was. She studied my face and told me it looked just like a very faint butterfly rash. She works with kids and has had quite a few lupus patients. At the time I told her i wash just flushed from walking around. Then I noticed that it wouldn't go away for months. My friends asked me if I had sun burn. But when I showed my doctor photos of it (where it was very apparent) he said some bull **** about how the rash usually doesn't spread across the nose (it was never on my nose, he just didn't care enough to even look at the picture). If anyone took the time to actually look at it it is so clearly shaped it looks like a drawing of a butterfly rash you'd see when you look it up. That's how clear and defined it is. But my doctors don't listen to me or care enough to listen to any evidence I have to present.
2143641 tn?1396681743
Last year I had a red rash around the nose from Psoriasis which looked a lot like Lupus except that it was also over the nose.

the reason why the rash in Lupus looks like that is also linked to the particular composition of the skin in that area of the face, therefore you could have a reaction with a similar shape for from a different origin, eczema, psoriasis or another autoimmune reaction. Try to find on the internet other butterfly-like rashes that look like yours and may have been diagnosed with something else not Lupus.

Avatar universal
I've been talking to my aunt who is a retired doctor. She can't do anything for me except give me advice. She was the one that told me about the rash. She has reviewed my symptoms, there is no reason to suspect it to be anything other than lupus. I have spent countless nights looking up everything under the sun with similar symptoms. There is nothing else it could be. I have more than enough symptoms and evidence (test results) the only thing left to do is find someone who cares enough to look. The protein in my urine is so high there is no excuse for the way the doctors have treated me. They tell me everything is normal and send me home when I have 17 times the amount that should be in there. There's no question of what the disease is. The problem I'd getting someone to do something before there is irreversible damage. I've been lucky enough that my joint have managed to get by without damage.  But it's been a year since a doctor has even bothered to check my urine. Also, my medication helps with the rash. It's not a big issue. Whether it's related to lupus or any other disease it is treated. The only reason I mention it is it just one more bit of evidence that points to the obvious cause.
Avatar universal
If there's anything else you think it could be then you let me know. But I've looked at everything there is on the web to look at. I'm not wasting anymore time searching for what it can be because doctors have already proven that no amount of research or evidence does any good. I have just about every lupus symptom there is other than seizures. It's more unlikely that's it's another disease than it is that it's lupus. A few days ago I would have said I wasn't sure. But it's come to the point where if it's not lupus then it's a complete mystery. But if it's not lupus then every bit of information about lupus on the internet must be wrong then. It comes down to no one gives a ****. I'm not some rich white girl in Beverley hills so no one will even devote one minute of their time to even read the damn test they ordered. They just take my money and go on to the next person
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