Please help! Could I have Lupus?

Hello. I'm a 26 year old woman suffering from strange symptoms. My past diagnoses are panic disorder, anxiety, major depression and IBS, but I have had these illnesses for decades and my new symptoms don't resemble my past experiences. In late June of 2010 I started having strange panic attack-like episodes where I would have visual disturbances such as scintillating scotoma/visual snow/migraine auras, tunnel vision and blurry vision, along with breathing problems where I felt as if I could no longer breathe for a few seconds and heavy and dizzy, as if I were going to faint, I would have a fast, pounding heartbeat, nausea, burning sensations in my neck and shoulders and feel completely strange and disoriented. These episodes were nothing like what I normally experience with panic attacks. These attacks were brought on by cannabis and alcohol, or sometimes when I was sober. At this time I also noticed I was having right rib pain along with dark, frequent urine.

By the beginning of July I noticed my urinary symptoms were getting worse. I couldn't sleep without going 2 times a night and would wake up with back/flank pain on my right side that wouldn't go away until I urinated a few times. The pain under my rib intensified and I was worried I had a kidney infection. I went to a clinic and they treated me for a UTI, despite not finding bacteria in my urine. The antibiotics made me severely ill, but the UTI like symptoms subsided for a few weeks. After that my symptoms returned along with foul smelling urine. When I returned to the clinic they found no bacteria again and sent me off. I kept getting worse and new symptoms kept popping up. I noticed I was nauseated every morning, with occasional vomiting, my face started to become red for a few hours each day and I would have painful urinary problems and have visual disturbances.

My doctor thought I had fibromyalgia, but I was skeptical of her diagnosis. She ran blood tests, CBC, blood sugar, sedimentation rate, thyroid hormone and an ANA, which all came back negative. She said I was having anxiety and sent me to a psych. He put me on Xanax and Desipramine for anxiety and depression. The Xanax only helped a little, and the Desipramine even less.

By the time fall came around I had developed daily chest pain, shortness of breath, difficulty breathing, confusion, poor memory, back pain, fatigue, arm/leg weakness and pain, neck pain, stiffened back smucles, paresthesia/numbess tingling/ sensations of hot/cold in face/hands/arms/chest, nausea, facial redness, dizziness, lightheadeness, constipation, urinary problems, visual disturbances, eye pain, dilated pupils, enlarged/painful lymph nodes in neck/armpit/chest, leg rashes, headaches/migraines, muscle jerking, in coordination, loss of balance, spinal zaps/pain, momentary inability to understand words or writing, involuntary noises and movements in arms/legs spine, shaking, urinary incontinence/difficulty urinating, bowel dysfunction, brain fog, cold sores/, mouth/nose sores, and other neuroligical-like symptoms.

The thing I noticed that disturbs me most is this facial redness that lasts for a few hours to a whole day, and spreads from my cheeks to the bridge of my nose. The daily constant nausea. The constant scintillating scotoma and other visual phenomenon. The urinary problems. The involuntary jerking movements and noises. And my swollen lymph nodes.

Another weird thing that happens is when I get angry my heart pounds harder than it ever has before, and it makes me feel faint, euphoric, dizzy and lightheaded.

I had an EEG recently, and had weird jerking and visuals during the test, but it came back negative. I don't know what to do, my doctors are giving up on me, and I'm suffering so bad. I'm utterly convinced that it must be Lupus, MS or another type of inflammatory and/or neurological disorder.

I know I can't get a diagnosis online, but any advice would be very helpful. Should I see a Rheumatologist or a Neurologist?

My mother has epilepsy and supposedly MS runs in my family, not my immediate, but my distant family. I don't know of anyone with Lupus. What could be happening to me?

Thanks.

Post Edited (pink blobs) : 2/7/2011 9:18:17 PM (GMT-7)

Lynnwood said...
I think you are on the right track with a rheumatologist or a neurologist -- but why aren't any of your other doctors recommending that?

Well one just made a guess at fibro, but didn't recommend any Rheumies or neuros. I'm also thrown off by the negative ANA test and EEG.

aimsgirl16 said...
I agree with Lynn...

Try to see a rhuematologist. They are the ones trained in lupus, the ones to be able to tell you if you do have an autoimmune disease. Another thought...Have you been tested for Lyme's Disease??

Does LD leave a malar/butterfly rash on the face?

The face rash seemed like flushing at first, but looks more rash like now than it did before, as it does get flaky sometimes. I even have red bumps on my cheeks where the rash touches. I notice the rash get darker when I'm feeling worse, like my whole body feels like it's inflamed, especially my chest and neck. Now I have a rash behind my knees too and my knees feel stiff and achy.

Is it possible to have fluctuating ANA and Rheumatoid factor test results? That's what I read on one site, but I wonder if it's true. I got blood tests done very early in my illness around August, I had just begun to feel sick and I have gotten much, much worse since then. I should probably test for Lyme Disease, just to rule it out, and do another ANA? Maybe I should see what the Rhuemy thinks instead of going back to my GP, as she seems to be unable to help me. Has anyone has normal ANAs that were later positive?

Lynnwood said...
GP's are not trained to recognize or diagnosis Lupus or Rheumatoid diseases. That is the job of the rheumotologist and that is why we recommend you see one. We are not drs and cannot diagnose you here.

ANA's, RA factors, and many other labs tests fluctuate. Very few do not fluctuate!

ANA does not always relate to disease activity, and is not final factor in diagnosing Lupus.

Please see a rheumy -- because you are worried about these diseases, even seeing a dr that can rule them out would help with your final dx.

I agree with you. Thanks for the awesome advice and support! I've had a hard time talking to my boyfriend and family, even my doctors about my symptoms, they all think I'm crazy. I know that it's not normal to have weird face rashes, breathing problems, urinary dysfunction, swollen lymph nodes and severe nausea everyday. I have a right to feel better. Everyone does!

I think I'd see a neurologist.

My symptoms keep getting more complicated. I had stabbing chest pain and trouble breathing last week. The pain extended to my left arm, shoulder, back and neck. My lungs felt constricted from the outside. I felt as though I couldn't fill my lung all the way. I went to the ER and they didn't find anything except for a rapid heartbeat and high blood pressure which was somewhere around 147/75. It went away after a few days of rest. I think I may have had pleurisy or pericarditis. It felt like having asthma on the outside of my lungs.

Now I'm getting mild joint pain in my hands, knees and toes. It's not severe, but annoying. I'm also experiencing what appears to be Raynaud's Phenomenon in my hands and feet. I noticed yesterday and today that my toes were cold and started turning a distinguishable shade of indigo. My hands and feet keep turning red and white, and sometimes even bluish in the cold weather.

I saw a Rheumatologist the other day and he didn't think I had anything other than possible case of Fibromyalgia. He suggested I probably had a neurological disorder more than anything.

I know I'm definitely having some neurological symptoms, most notably peripheral neuropathy, as my extremities and face keep feeling hot, cold, numb and tingly with urinary difficulties. I've also had myoclonic jerks in my arms, back, and legs. They're involuntary muscle spasms that come and go. I haven't had a full on seizure, but I have suspected some neurological anomalies. But can't those also happen with other autoimmune diseases?

The redness on my face keeps worrying me. It comes and goes throughout the day. It get's blood red sometimes, with small bumps and I notice some slight skin peeling at times. It looks like a butterfly rash for sure. It could be flushing, but it doesn't look like flushing I've had in the past.

I'm surprised the Rhuemie didn't think of anything he could help me with. He just looked at my joints and did a physical exam, no blood tests or anything like that. He sent me on my way with a Fibromyalgia pamphlet and suggested a neurologist and a MRI.

I told him I was concerned that my face was red to see what he thought, and he said he couldn't tell my face was red whatsoever, even though it obviously was. I'm very pale in complexion, so maybe he thought I looked normal. But I have had other doctors comment on how red my face was during my visits. It always extends from cheek to cheek and across the bridge of my nose. He didn't seem very versed with Lupus, when I read his profile online. I was afraid to openly suggest Lupus to him, but I hinted at the concern and he shrugged it off as nothing.

I don't know what to think anymore. Are there even neurological disorders that mimic Lupus? I'm think of MS particularly, but I've read it doesn't cause nausea or Raynaud's like symptoms. I've also heard that MS and Lupus can be co-morbid diseases. My mom has epilepsy, but I know my symptoms don't resemble that.

I'm so lost right now. I know it's not celiac disease, as I have been tested recently for that and it came back negative. I've also had a negative thyroid disease test. What else should I rule out besides lymes disease?

Post Edited (pink blobs) : 2/21/2011 11:29:43 PM (GMT-7)

Hi!

I see both a neuro and rheumy, and was lucky in that my 3 docs all agreed that regardless of dx down the road, it was important to manage the symptoms, and con't to do tests regardless of their being negative/wnl. My rheumy is affiliated with a big university teaching hospital that has an AI disease center. I'd recommend starting with one near you, and maybe connecting to your local Lupus Foundation group to get some md recommendations from people who actually have lupus or fibro. Please hang tough and don't give up. I worked with drs. who knew I was sick, and it still took 8 yrs. to see Lupus written on my lab requests. And, welcome to my world, your symptoms are mine. I took cell phone pictures of my swollen sausage feet, face and sun rash in good light, and always go to my appts. with a misery log and question list, in priority order.

hugs,

suetoo