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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Post viral illness, immune reaction. or ongoing infection?

 Curmudgeon76 - Mon Oct 22, 2007 12:15 am

Hello all,

In Nov of 2006 I was diagnosed with mono. I had a negative mono spot test which was done immediately after a strep throat culture. Atypical lymphocytes however, were detected. I had the mono spot repeated months later and it was still negative but the doctor said my EBV titer was really high indicating a recent infection.

I felt better for a little while but at the end of March symptoms of a new illness presented themselves. It started with painful mouth ulcer (I got these "canker" sores before the mono started as well) a sensation of weakness and coldness in my hands, a dry cough, and tenderness above my groin on the left side.

Since then, the symptoms have been steadily progressing. I next experienced tachycardia upon very minimal exertion (sometimes up to 130 bpm) and felt completely weak, even showering was difficult. I also experienced bilateral jaw pain and a sensation of tightness in my throat which I still get. Soon after I noticed my muscles felt pulled and extremely tight even though my reflexes were normal, and I started noticing painless twitching in my neck as well as swollen glands, hot flashes, arrythmias and sweating. On June 1st I went to the emergency room due to a sensation almost like nerve pain shooting up my spine and into my jaw and brain. The room seemed to spin and everything around me got really loud.

Since then, I've noticed increasing neurological symptoms (extremely frequent twitching all over my body, often visible under the skin), burning sensations in my muscles, stabbing headaches, and what seems to be autonomic dysfunction according to my doctor. I am unable to gain weight no matter what I eat and often feel extremely shakey and have a sensation of hunger even after eating a big meal (this happens most often with high carb foods).

Most recently, while on vacation in England, I had an attack which seemed like vertigo, the room seemed to tilt left, then right, and then I felt like the room was moving and stationary objects seemed to be jiggling and vibrating. This lasted for 24-48 hours and I experienced feelings of giddiness and confusion which has subsided to a degree. When I get off elevators I still have the sensation, and it feels like something is pulling me down towards the ground.

These symptoms to me, and to my doctors, are very non specific and they don't know what to make of them. I have had multiple CBC's with differential, metabolic profiles, endoscopy (which showed chronic inflammation in the esophagus, duodenum and stomach, biopsy showed nothing specific), MRI of the brain (which showed possible chronic inflammatory process, bilateral T2 mild hyperintensities in the peritrigonal white matter, as well as a mildly dilated virchow-robin space. I had a follow up brain MRI 3 months later and the lesions had not changed and no new lesions were present. My neurologist said they were so faint he could barely make them out. I have had a lumbar puncture (which I was told by my original neuro was normal, but my new neuro says mildy abnormal), tilt table testing (which showed some kind of unspecific vasovagal abnormality), 24 hour urine study for dopamine, epinephrine, seratonin and catecholamines I believe, a 48 hour ambulatory EEG which was normal, multiple normal EKG's and a normal echocardiogram several months ago, as well as 2 chest x-rays over the coruse of a few months. I also had an MRI of the neck which showed enlarged lymph nodes (the largest being 2.0cm but not particularly rounded, yet to be biopsied) as well as a tissue hyperplasia at the tongue base which also has not been evaluated. I also had an abdominal MRI and CT scan prior to that, which showed no abnormalties. I have had fibrogen and homocystine tests, amylase and lipase tests and am awaiting on the results of a CD57. I live in an endemic area for lyme disease and am currently being treated for it by my PCP despite multiple negative test results in serum and CSF. I am on a research protocol that worked for my neighboor consisting of 750mg of Flagyl XR once a week, as well as 200mg of doxycycline twice a day. I've been on this protocol for over a month and have noticed no reduction in the severity of my symptoms.

I realize this has gotten quite long but I am desparate. I'm not sure where to go from here but my body is telling me something is definitely wrong. I am a student and have terrible insurance and am now thousands of dollars in debt. Any insight or suggestions would be greatly appreciated. I don't feel like my doctors think my situation is urgent enough and I am waiting months for appointments. Thank you so much in advance
 Curmudgeon76 - Mon Oct 22, 2007 12:25 am

Also, forgot to mention in my last post. Sex: Male, Age: 25, past diagnosis of benign premature atrial contractions in 2005, as well as sleep apnea years beforehand (I was very overweight at the time). Family history of diabetes, and my grandmother died of pancreatic cancer.

The additional tests I forgot to mention are allergy testing, rheumatoid panel, selected paraneoplastic testing (anti-hu and anti-yo i believe) Sed Rate and C Reactive protein. Stool testing for common parasites and a fecal fat test for malabsorption which were normal. Also tested for toxoplasmosis, HSV in serum, west nile virus, syphillis, cytomegalovirus, as well as general ANA test which was normal, T3, T4, and TSH test for thyroid which was normal.

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