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20686019 tn?1503687461

Mystery Illness Help

I don't know if this is a rare disease or not because I have no idea what it is.  But whatever it is, outs left multiple doctors mystified.  

Background health info: 30, female, migraines for approx 20 years, menieres for about 10 years, history of undiagnosed fatigue and muscle pain, and had my gallbladder removed 13 years ago

Back in the beginning of May I became very sick. I was so exhausted I couldn't get it of bed for days. When i did,  just standing made me feel nauseous. Walking a few feet nada me throw up. I thought at the time it was some bug/ virus/ infection that would get better. It didn't though. Mid may I was in the er for dehydration because I couldn't keep anything down. Since then I've gotten better at managing but the symptoms remain:
-Nausea
-Nausea and vomiting induced by walking
- some coughing
- fatigue worse than I've ever experienced before
- muscle weakness that often comes on with the vomiting, which has resulted in my legs giving out and collapsing. Over many a time been stick lying on the ground for 30 min to an hr  throwing up, unable to stand.
-I am better with rest. If I sit all day I'm fine. But standing and walking become problems.
- muscle weakness also causes abnormal gait. When a doctor has me walk in the office in a straight line, I felt like a toddler, I couldn't control where my feet went.
-Occasional tremors
-Short term memory loss and confusion

I started with my pcp, she ran blood work and ordered an abdominal ultrasound.  Blood work showed elevated liver enzymes and white blood cell count, but later tests had the liver enzymes back down to normal. Oh and my insulin (non fasting) was elevated -30. Blood sugar (non fasting) was low end of normal.
Abdominal ultrasound showed my liver is denser than normal - diagnosed as fatty liver - but nothing else abnormal.
My pcp said that the fatty liver and elevated insulin would not explain my symptoms, and likely predate them.  
After this stool samples were ordered to check for infection/ parasites, but came back negative. Hepatitis tests came back negative.  
My pcp then referred me to gastroenterology, where the doctor said a colonoscopy would not be useful since I had one about 4 years ago. She did order an upper hi endoscopy though. The endoscopy showed inflammation from throwing up multiple times daily,  and also intestinal metaplasia. Inflammation was attributed to being caused by the vomiting, not causing the vomiting.  The IM the doctor said just happened to be found but wouldn't have anything to do with my symptoms.
My pcp then referred me to ENT to see if it could be related to my menieres. ENT said this is not inner ear related.
Next my pcp said it could be neurological and ordered a brain MRI, I just had the MRI and the report says nothing abnormal was found.  

Every doctor I've seen says the same thing - they have never seen anything like this before and they have no clue what it is.

Also important (I think) to know that up until May when this began I was fairly active. I work full time, I'm a full time student,  I lifted 2-3 times per week, did Krav Maga (1hr) 1-2 times per week, and swam almost everyday,  usually short distances but once a week is do a mile long swim.  
Since this however, I can't do any of that. I can't take my dog for walks. I can't cook anything that takes more than a couple minutes because I can't stand long. Doing laundry which requires going up and down stairs is so incredibly draining, I can't keep up with it. I am exhausting the leniency my work has had with me being ill, I can't keep up with work like this. I can't keep up with school and an now having to leave school. This is ruining my life and no one can tell me why.

It's August. This has been going on nearly 4 months now with no answers, and without getting better at all.

So please, if there is anyone who has some idea what this could be, I'd appreciate any guidance to take back to my doctor.
2 Responses
Avatar universal
Although your symptoms are not specific, the whole picture (fatty liver, weakness, vomiting) might point to a mitochondrial disease. I suggest contacting a specialist in the field (usually a neuro, sometimes a geneticist) https://www.mda.org/disease/mitochondrial-myopathies
Avatar universal
My son has had the same mystery illness.  And the only possible answer they came up with was rumination syndrome caused by a virus or some exposure to toxins months ago.  He however, although much less continues to vomit when he walks sitting is ok.  He also gets headaches that become severe.  They only thing found in two MRI was a small pineal cyst that they say should not cause these symptoms.  He has had genetic testing and no midochonndrial disease, tic bite infections, kidney, blood etc...no one knows.  Did you get any answers?  I'm desperate to hell my 11 year old son get back to a healthy weight and his past active life.  
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