For more than a year, we've been searching for answers on what's going on. If you're a doctor and love puzzles, or think you're better than Dr House on TV.. :) .. Then read on!! We're still waiting for some test results and are still
seeing doctors trying to come up with a diagnosis, but if you have any suggestions on things to look for, tests that may be helpful, or anything else, PLEASE RESPOND!!!
I need to note that we love our doctors. They've been INCREDIBLE for us and we have great confidence in them. (But any help is appreciated!)
I don't have access to all results and doctors notes, but what I do know, I'm writing here. The timeline is approximate.
Here goes... :)
60 year old Canadian woman with copd (lifetime smoker). No drugs, no alcohol. Fairly seditary but generally healthy. No recent sickness. No known allergies. No medication except occasional ventolin. Broken wrist 4 months earlier. Lived in southern Mexico
(Cancun) and Belize for 3 years until 3 months ago. 20 years ago, woke up with some facial numbness. Saw a doctor, got an MRI, and it resolved on its own after a week or two. Was told she might have had a little stroke (but current round
of MRI's dont show any evidence of an old stroke). No other relevant medical history.
Start of timeline:
Day 0-60: Tiny bit off balance when going to sit down from time to time. Mentioned that she'd feel someone touching her leg, then look down and realize it was her hand.
Day 61-67: Developed severe balance and perceptual issues. Example: could turn and walk thru a door in one direction, but couldn't find the door going the other direction. Would constantly veer to the right while trying to walk in a
straight line (Vision unaffected though). Motion sickness passengering in a car (first time in her life).
Day 68: Admitted to emergency room at hospital. Given a head CT Scan:
Axial CT slices (No IV Contrast)
Symmetric ventricles, appropriate for age
Findings favored to represent a moderate right frontal/parietal lobe (posterior right MCA) infarct. Likely subacute (less than 24hr) due to preservation of grey/white matter interface. No hemorrhagic component. No evidence of
mass effect. Some heterogeneous nature to the hypodensity in this region. Unlikely to represent a neoplasm, but not completely excluded. Incidental note of sinusitis. Recommend a contrast CT study.
Day 69: Given head CT with contrast.
Clinical: R/O tumor.
Midline structures not displaced. Peripheral enhancing lesion measuring 3 x 3.5cm (1.2 x 1.4 inch) in the high right frontoparietal region abutting right lateral ventricle with adjacent vasogenic edema and mild mass effect. No
new lesions. Findings similar to yesterday's non-contrast study.
Impression: Lesion is an isolated finding. Somewhat unusual in appearance and could represent a primary neoplasm, although constrast enhancement due to breakdown of the blood/brain barrier of a recent infarct could result in this
Day 72: Given head MRI with constrast
Technique: Sagisttal T1, axial diffusion weighted images, axial and coronal T2, axial FLAIR, axial T1 SPGR pre and post gadolinium
A T2 hyperintense and peripherally enhancing mass is present in the right frontoparietal junction extending into the right callosal body and splenium. Tumor involves the ependymal/subependymal tissue at the right trigone. No
enhancing, disseminated tumor is identified. Findings most compatible with a high grade glial neoplasm. Lymphoma can have this appearance, with peripheral enhancement, in immunocompromised patients. Metastatic disease typically does not
involve the corpus callosum.
Elsewhere, there are scattered, nonspecific foci of periventricular and subcortical FLAIR hyperintensity, none of which show enhancement.
Ventricles and basal cisterns remain patent.
Day 81: Surgery day.
By now, she's progressed from left side weakness, to the point where she has no feeling or use of either leg. Can barely control left arm and she often lies on it without realizing. She has been getting gradually worse until now.
Neurosurgeons tell us it could be cancer, an infection, or something else. They expect to open her head up and remove whatever they find (Except brain, i hope! :)).
Surgery went well. Nothing was found. Surgeons said it looked just like swollen brain tissue, white in color. They took a tiny piece for biopsy.
Started taking Decadron (Can't remember if she started a few days before surgery, or only afterwards)
Day 83: Started being able to move her toes again. This was the start of her recovery, and progressed over the next months to being able to walk again.
Day 84: Switched to methylprednisolone for another week before being released from hospital.
Brain biopsy results showed demyelination. The tentative diagnosis was Multiple Sclerosis, but there was much doubt. The biopsy had many eosinophils, often seen with an allergies or parasites. The brain lesion was also much
larger than usually seen with MS.
Day 96: Trying to rule out other possibilities, such as neuromyelitis optica... Ordered an EVP (Results normal), and full spine MRI. MRI looked fine (No lesions. Signal from spinal cord appears normal. No enhancing mass. No evidence of
metastatic disease). Immunology tests were done:
Neutrophil cytoplasmic Ab - Negative
MPO-ANCA - 1.4 (within 0-20 range)
PR3-ANCA - 2.2 (within 0-20 range)
ANCA Pattern - Not indicated
ANCA Titre - Not indicated
At this point, with a lack of any other diagnosis, it seemed like the diagnosis of MS is what was sticking. But nothing further was really done for a while. Recovery was underway anyway. No medication was given due to the
uncertainty of the diagnosis.
For about 2 months, she improved to the point where she could walk a mile without any mobility aids.
Then, she began to get numb in her toes and soles of her feet, as well as buttocks. This progressed over a month to full numbness from the waist down. The muscles still worked, just the feeling was gone. She compared it to the feeling of
lidocane when the dentist numbs your mouth, or like her leg had fallen asleep. She could still feel touch and pressure on her leg. She mentioned she couldn't feel when she needed to have a bowel movement any more, so she just tried every
time she urinated (She's had no bowel or bladder control problems though). This lasted a couple months and has partially resolved, although she still has significant numbness in the legs.
Also has noticed her left hand seemed to be getting stiff.
Around this time, she also developed an occasional constant swaying (truncal ataxia). Some days she's swaying all the time while seated, unless resting reclined. Some days, she can sit still with virtually no swaying. She also has good
days and bad days when it comes to her walking ability - on the bad days, she describes her legs as having 50 pound weights strapped to them and it takes a lot of effort to move them.
Day 190: Back to doctor for neurological exam:
Doctor's notes: Found a weakness in right hand. Decreased joint-position sensation in her legs. Both legs are also weak at 4/5. Difficulties with her balance.
Suspected a relapse, so gave 3-days of IV Pulse steroids (Which ended up having no effect one way or another)
Day 205: Back to doctor for neurological exam
She reported more numbness on right side of her body and on the face, and more stiffness. More trouble keeping her balance even while sitting.
Doctor's notes: Visual acuity is 20/40 on the right, 20/32 on the left. Experienced horizontal nystagmus and mild weakness in left leg. No Hoffmann, and toes are downgoing. Decreased joint position sensation in both legs as well
as vibration. Her light touch and pinprick are unremarkable. Walks with wide-based gait.
Day 255: Back to doctor for neurological exam
She reported she feels like she's getting worse and is more off balanced and fatigued, but the stiffness in her hands has improved.
Doctor's notes: Neurological exam is unchanged. Her balance is better when she is distracted.
Day 256: CT Scan of head with contrast
Findings: The underlying tumor has been excised. Residual white matter hypodensity without mass effect or enhancement is noted extending from the craniotomy site to the upper aspect of the posterior aspect of the right lateral
ventricle. No other lesion seen. No other significant finding.
Impression: Findings consistent with post-treatment changes. No definite residual tumor is seen, although it is difficult to exclude a focus of non-enhancing tumor amongst these white matter changes.
Day 300: MRI of the head (no contrast)
Findings: Focal cerebral tissue loss and cystic changes are noted in the cortical gray and deep white matter structures of the right parietal lobe corresponding to a site of surgical biopsy following previous imaging studies.
Mild volume loss, enlargement of the posterior body and atrium of the right laterl ventricle and mild widening of the adjacent cortical sulci is noted. Increased T2 signal is present in the adjacent deep white matter. Allowing for
differences in imaging modality, these findings are unchanged from previous CT. Punctate T2 hypo-intense foci along the surgical tract margins are consistent with small foci of hemosiderin deposition.
No spatially separate mass or white matter signal abnormality identified.
Mild thinning of the posterior body of the corpus callosum adjacent to the biopsy site. Callosal signal intensity is normal.
Impression: Post biopsy focal cerebral tissue loss, cystic change, and encephalomalacia in the right parietal lobe are unchanged from previous CT.
No new or spatially separate intracranial mass or signal change is seen.
We've been referred to another doctor for a second opinion.
(To follow in next post - this one's too long!)