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Mystery Autoimmune Disease

I am a 32yo woman from Oklahoma.  My post is too long so I am trying to shorten it.

In June of this year I had to take my car to the mechanic. I was outside in the shade with water less than 10 minutes. My neighbor pulls up and I start walking to her car. My vision starts fading and I feel faint. I make it to the car when suddenly my stomach starts to spasm rhythmically causing projectile vomiting. I began having esophageal spasms December 2020. I had an esophageal motility test performed in January 2021. The sensor was placed just fine and easily. The first few sips of water were fine. Then my stomach started rhythmically spasming. The June incident was identical to this test. I developed a weird symptom that I cant find anywhere. The sensation to sneeze and vomit are the same.

I am a life long migraine sufferer. The migraines on my left side are regular classic migraines. The ones on my right are horrific. I have two different migraines on my right side. The mild type, I cannot stay awake no matter what. The second type is terrifying. The second type feels like it is on the Trigeminal Nerve at the temple. The right side of my head from my eyes to my spine feels like it is going to explode. This type always causes vomiting which makes it worse. The pain is so intense when I vomit that I lose my vision during the process. My eyes and nose will run profusely even with no allergies. These typically last less than 24 hours and sleep is the only thing that helps.

I am incredibly fatigued. I’ve tried exercise but after a minutes my muscles give out and I feel faint.

After surgery I developed severe bladder issues a few hours after I woke up from the surgery at 27.  When the spinal block wore off. I lost the sensation that tells me I need to urinate. I would only get an extremely sharp pain. I would have to walk slowly and softly because even walking would send the shooting pain from my groin to abdomen. I was tested for Interstitial Cystitis. They said positive. The issues cleared up on their own.They returned in 2018 as “overactive bladder” symptoms. They come and go.

In 2019 I developed a rash behind both ears. It was painless and didnt itch. It just looked ugly. I still have two circular plaque disks. One behind each ear. They are very thick. I have seen several doctors. A biopsy was ordered but my insurance rejected it. I do have images of this as I still have the plaques today. My hair fell out around them. It’s awful. I also had one nearly a decade ago on my hairline near my forehead. It’s still there but it doesn’t bother me. The hair fell out around it too.
Eating Issues: Just a few bites and I have diarrhea. Undigested food and a yellow liquid that burns. Food will sit in my stomach for 12 hours until I vomit. I do not feel the sensation of hunger. Just like my bladder used to do, my stomach will get a very intense pain and a wave of nausea. No matter what, I get full after a few bites. I’m 94lbs today.  

I have had documented infections of my entire colon. Colonoscopies revealed nothing just a tortuous colon. Same with endoscopies. On the inside everything looks good. One endoscopy revealed a lot of mucus and bile in my duodenum which was biopsied. It revealed nothing.

I visited an optometrist in 2019 for an updated glasses script. It revealed tortuous vessels in both eyes.

In 2018 my right jaw began hurting and I could barely open my mouth. My dentist took x-rays which revealed my jaw was inflamed. They could not find a reason. I was given pain medication, IV muscle relaxers, etc. Nothing worked. I could barely eat due to the pain.  It disappeared out of nowhere late 2020.

1. I developed Trigeminal Neuralgia type 1 on my right side when I was 3 or 4 years old.  The “cattle prod” headaches, as I call them, started out small. They are now large in area around my ear. They are now occurring in my right temple area as well.
At 11 years old my right knee swelled and turned purple. I hid it from my parents. By the time I was 13 I was walking with a very noticeable limp. I was taken to my pediatrician who took X-rays didn’t see anything that would cause inflammation. At age 14 the swelling and pain disappeared with NO intervention. At age 17 I was driving home at night when suddenly I had double vision. I was seen at the ophthalmologist the next day. I was diagnosed with Optic Neuralgia and a Nystagmus in my right eye. I’ve worn glasses ever since. Still have the Nystagmus. I had Mono 6 months before this incident so they thought it was related.
I had my daughter (my only child) at 19. I was 120lbs when I gave birth. I am a smaller woman. I gained 20lbs total during my pregnancy and was diabetic.
A few months later (2008) I developed kidney problems. I do not have these records. I remember the doctor saying my levels were “15” and I had to have my levels checked frequently. Sometimes they are still low. I remember my urine samples would have floating (and sunk) blood clots.
November 2009 I am seen at a local Urgent Care clinic. I had swollen joints and a rash on my face. He decided to run an ANA panel which was positive 1:360. I have this record.
2009 I am diagnosed with Raynaud’s Phenomenon. My feet have it the worst.
2008/2009 I develop an air whooshing in my left ear that is insync with my heart beat. In 2019 the whooshing turned into a constant electrical chirping. Like wires are crossed. Gabapentin does help with the tinnitus. I’ve had my hearing checked and it’s fine.
2010 I had an MRI on my brain because they thought I had Multiple Sclerosis. It was negative. This was repeated in 2021. I do have these images.
Around 2011 my legs started turning dark purple in the shower. I feel faint and light headed. No doctor could tell me what I was experiencing. A few months back I figured it out it is Livedo Reticularis. It was pretty obvious too.
October 2011, I have a gran ma seizure as I am drying off from the shower. I took tramadol that morning for a headache. They said it was probably that. An EEG was performed. Showed no epilepsy but a sharp transient on the right side. I had a cattle prod headache during the EEG so that is probably the transient they picked up. My guess anyway. This issue is currently being disputed and revisited. I have these records.
I have several years worth of positive ANA screens. Homogeneous pattern. The more in depth blood tests were negative/normal. Just always a positive ANA.  
I have years of documented inflammation with no cause that disappears on its own after about 2 years.
I have tremors in both hands. I sometimes suffer very visible tics with my Trigeminal Neuralgia.
The fatigue is just horrible. I feel faint just walking across the room. Sometimes when I start walking I will get a weird vibration that moves from my upper abdomen all the way up my head. It causes the muscles in my hands to weaken and drop anything in my hands. Sometimes my vision goes. I have fallen several times.

Incidental but maybe not: I grew up in a rural area outside of a small town. The incident was around 1991. Since we were living in a rural farming community my dad allowed some of the farmers to fly over head and spray Round Up. My dad was saturated by the overhead spray. He developed non-hodgkins lymphoma and beat it 6 times. He’s had other cancers as well. I was a little tomboy and was always outside playing. Although I was not directly sprayed like my dad, I was allowed to play outside shortly after the planes were done. We think I may have been exposed to it on the ground outside. Our house and cars were also sprayed. My community didn’t know the dangers of Round Up in the early 1990s. Like I said, this could be incidental or it could be related. I do find it odd that I developed Trigeminal Neuralgia around that same time. No one else in my family has it. I wasn’t born with it.

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649848 tn?1534633700
Have you been tested for Lupus?   My daughter has Lupus and has had some of those same symptoms.  Livedo Reticularis (do you have a formal diagnosis?) is also sometimes associated with Lupus.  

Another thing you could ask to have tested (if not already done) is B-12.  Deficiency can cause some skin issues and of course, it causes horrible fatigue.  I have Pernicious Anemia and require weekly B-12 injections.
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Lupus is exactly what they thought it was to begin with. It was around 10 years ago. My rheumatologist said he couldn’t confirm it based off the ANA and that he needed the in-depth panel to be positive in order to diagnose it. I was told that several times by several doctors. We knew it wasn’t RA and we know it isnt MS. Then they would tell me not to come back until something drastic happens.

My new PCP is convinced it is Lupus. I have had a good chunk of the symptoms for years including the malar rash. I had the rash appear during a visit years ago with my former PCP. He said it was an immune response, I was probably allergic to something in the air, and to take a benadryl. Needless to say, I’ve had some horrible health care.
Oh and I do not have a B12 deficiency. I was tested a few times for B12 and D. B12 was always good. D is sometimes low though.
If you haven’t had any in depth testing done in the last 10 yrs and your pcp is convinced it’s Lupus, why doesn’t s/he re-order the tests?  Things can change in 10 yrs, so what didn’t show up then, might now.

There’s also the possibility that there’s more than one thing going on… When we have one autoimmune condition the chances of getting another (or more) are greater.   In addition, autoimmune often run in families, but not all family members get the same conditions.   For instance, I have Pernicious Anemia and Hashimoto’s, my son has Type I Diabetes and my daughter has Lupus - all autoimmune.  
I missed your comment about the vitamin B-12 and D.  Always keep in mind that a lab test that’s “in range” isn’t always good.  B-12 is one of those.  Most labs in the U.S. use a range of 200-900 or 200-1100, whereas, some other countries consider a B-12 of 500 deficient.  Of course, we’re all different, but, I personally find that I have to keep my level very close to the top of the range in order to avoid symptoms of deficiency.  Vitamin D deficiency can also cause some symptoms and is necessary for the metabolism of some hormones.  It’s worth supplementing to make sure your levels stay high enough - again, that’s 50-60, not just “in range”.  
I believe I had my B12 checked earlier this year. I will see if I have those records handy.
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