Should I push my new doctors to test for lupus and MS again?

It seems like in 2013 my health started declining rapidly and I've still no satisfying answers. I'm 21 years old and I was 17 when I started getting sick.

My first few illnesses weren't really a red flag. Nothing was really a red flag until a little over a year ago.

Around Christmas 2013, I randomly needed emergency gallbladder surgery. I had the surgery, my stitches ripped open, I ended up with an umbilical hernia... had umbilical hernia repair surgery, then one of my incisions got infected. So from Christmas until April I was "sick" from all my surgery issues... but it was not the end of the world.

After healing from both surgeries, I started having severe breathing pains/difficulties. I would go to the ER every few months when this happened because I was convinced I was having a heart attack each time. Over a span of several months, I believe I had 7 diagnoses of pleurisy, but the last time I was diagnosed with it I was told, "Yeah, we're just gonna keep calling it pleurisy because we don't know what it is."

During all this, my very unhelpful mother did nothing but tell me I was having panic attacks (because she has a laundry list of mental problems of her own and can't imagine me not having those issues, too). I kept telling her to please shut up, please stop minimizing my issue down to panic attacks - something was WRONG. (I'm not hating on people who have panic attacks... I DO have panic attacks from time to time, but very rarely. I knew this was not the case when I had "pleurisy" and I felt like she wanted me to feel like it was all in my head because that's the kind of person she is.)

So, we'll fast forward a couple months. I had fluid in my lungs, so I was finally diagnosed with pneumonia, but my symptoms did not align with pneumonia and the doctor said they were only calling it pneumonia that time because they didn't know what else to call it.

In March of 2015 I found out I was pregnant. I was okay at first, but then I started getting sick quickly. I was diagnosed with pre-eclampsia, spent three weeks in the hospital, and delivered via emergency c-section two months early.

*I remember two months before I gave birth, I was walking in a parking lot when I had an electric shock throughout my back and legs and I fell. My legs just gave out with no warning. This was my first experience like this, and it didn't happen again until over a year later.

A couple weeks, if that long after delivering, I couldnt use my hands anymore because my wrists and thumbs were in so much pain I literally could not lift my hands away from my body. I couldn't hold my baby, couldn't text or type, couldn't do anything "normal"... I was diagnosed with De Quervain's Disease, which is classified as "a painful condition affecting the tendons on the thumb side of the wrist".

At the time of being diagnosed, I wasn't completely satisfied with my diagnosis only because that particular disorder is caused from repetitive movements... I had been confined to a hospital bed for three weeks, plus I had the disorder in both hands. I feel like it would have affected one hand if repetitive movements had been the cause, but regardless the pain went away after a few months and I never thought about it again.

I had postpartum depression, so a couple months of my life are a little foggy, but somewhere between August and October of 2016 is when I really started to get sick.

It started with excruciating lower back pain that felt electrical and sent shocks throughout my body. At first I was told it was probably herniated disks because I had recently picked up a few couches by myself.

But then my legs started giving out frequently and I would either fall or almost fall at random. Then I started going numb. Every time I would take a hot bath, I would go numb and feel pins and needles from my head to my toes. Or I would wake up and half of my face would be numb.

Then I had a routine eye exam, which showed I had optic neuritis in both eyes, which was a cause for concern to the eye doctor because that was a red flag for MS.

During this same time, I started getting dizzy, my brain was foggy, I was exhausted, didn't have any strength, and my back was hurting so bad I literally couldn't walk some days.

Imaging had shown that I had five BULGED - not herniated - disks in my back that were not bulged enough to be the source of my back pain... So I was sent to a neurologist.

There were instances where I randomly fell out of bed because I was so dizzy I convinced myself I was falling and then I literally rolled out of bed.

There were countless days where I woke up paralyzed; my arms, legs, and head were so heavy I could not physically lift them to get out of bed. I would either lie in silence and stare at the ceiling until the numbness would subside or a family member would be concerned after hours of me being in bed and they would come find me and pull me out of bed themselves because I was too heavy to lift myself up. (I was in such an odd, fuzzy state when this would happen that I couldn't yell for help. I was literally paralyzed and felt mute. This still happens now, but not near as often as last year.)

So I managed to survive until I could see the neurologist. He tested for MS and neuromyelitis optica and that was it. When I didn't text positive for those, he pretty much cut me off and said there was nothing else he could do for me.

So I went to see a rheumatologist. I managed to get somewhere with this doctor; he diagnosed me with fibromyalgia and osteoarthritis in July 2017.

At that point I thought, "Okay, this is what I have, I can make this work."

I'd lived in Texas all my life. I moved to the Kansas City area in August 2017. I was having a lot of pain and discomfort with my eyes again, so I went to see an eye doctor.

She said I had papilledema of the eyes, which is essentially the same as optic neuritis, but I guess papilledema is what they call it when it affects both eyes. She tells me it's a pretty serious case of papilledema and that it's not something to joke around with. She says it clearly indicates a neurological issue, that I better not plan on having another baby any time soon because something is seriously wrong, and then she tells me I can't drive until I have a clear diagnosis! (In other words, she scared the s*it out of me.) She scheduled me for more spinal taps and MRIs...

But I was in unbearable pain after the tests she did on me, so 24 hours later she sent me to the ER.

So in the middle of this past September, I spent 8 days in the hospital. I still lack clear answers. The doctors thought I had a pseudotumor, but nope, I didn't have that either. Imaging shows that I have narrowing of the brain sinuses which is restricting blood flow to my brain, but not quite enough for a stent to be put there. (But this could possibly explain why my optic nerves are swollen and why I have so much head and eye pain.)

They also said I have a tiny blood clot on my brain, but that, too, was too little to fix so I'm supposed to be taking baby aspirin for that.

Other than that, they said I did have really bad swelling behind the eyes/brain but the reason why is a mystery. I had a whole team of neurologists and a whole team of opthalmologists telling me each of the 8 days that I had a neurological issue that had to be taken care of.

And on the 8th day, a "big" doctor comes in and says, "Eh, you're probably just having migraines."

What??????

He said, "You could have proteins in your eyes that were passed down from your parents that give the illusion that you have papilledema, when you actually don't."

I said, "Okay, can those proteins cause serious pain in and behind your eyes?"

He said, "Oh no, not at all, it's completely harmless."

Sorry, but I call BS. I had been seeing doctors for almost a year who told me I did have swelling behind the eyes/brain and that it was a problem... and I have valid symptoms that accompany the swelling... but one doctor says it's all an illusion and that's that?

He said he wanted to do an ultrasound of my eyes to confirm whether or not I had these "proteins" in my eyes. So he had one of his residents do the ultrasound, and guess what? They lost the results. I have called three times about my ultrasound only to be told they have nothing on file.

So let's fast forward to now... I've still got extreme pain behind my eyes in addition to migraines (these are different pains that I'm able to distinguish if that makes any sense). I'm still going numb and have pins and needles... my brain is foggy a lot (could be fibro fog). I'm VERY dizzy and lightheaded at all times. Often when i turn my head too fast, my vision goes black and fades in and out. I have terrible nose sores that come and go in either nostril - I can see swelling and redness on the outside of my nose, but the sores are on the inside and I can't touch my nostrils because it hurts. I have a scaly rash that comes and goes on my upper arms, cheeks, and nose. It gets itchy and doesn't always burn, but burns often when I put creams on it. The rash is worsened by heat, hot water, light, stress, etc. I've had blood in my urine for two years and nobody can tell me why. I have liver damage despite having consumed alcohol maybe three times in my life. There's the papilledema and narrowing of the brain sinuses. "Pleurisy". Trouble urinating... IBS... GERD. Extreme light sensitivity with my eyes. Extreme dizziness and blurred vision. Cold sensitivity in my fingers and hands. Overall pain (probably from fibro and osteoarthritis)... and some days I can't keep my eyes open to save my life. To top it all off, I'm highly depressed now, which makes everything worse. The pain in my head is going to be the death of me if I don't get help soon. I just don't know how to approach a doctor with all this... should I ask to be tested again for lupus or MS? Should I accept that fibro and osteoarthritis are plenty as it is?... I just don't feel right. I don't feel normal. I don't know why I have stenosis of the brain sinuses. I just don't understand. I'm tired. (And yes, stress triggers these episodes. I might be lucky to go a week or two where I feel okay... my severe symptoms come in episodes.)

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