I am a 42 year old female who began experiencing various symptoms about a year ago. I have been to my PCP, an eye specialist, and 2 different neurologists so far.
This is what I have been told so far: Vision loss was the first symptom I had that brought me to the doctor. My neurologist now appears to have completely written this off to migraine, thus wasn’t interested in the report from my eye doctor. So he feels that is a whole separate thing that isn’t related to the rest of my symptoms.
Muscle weakness - Unspecified Myopathy. In-office neuro tests showed significant upper and lower body weakness in general. Since then, it has spread to my throat/swallowing muscles but only when eating certain foods. Both hands/wrists and both thighs - muscle stiffness - comes and goes in my thighs.
Brain MRI results:
"Multiple focal areas of abnormal signal are appreciated throughout the periventricular white matter of both cerebral hemispheres extending into the centrum semiovale. FLAIR weighted images in sagittal plane reveal no focal abnormal increased signal in the region of the corpus callosum." "MULTIPLE FOCAL AREAS OF ABNORMAL SIGNAL IN THE PERIVENTRICULAR WHITE MATTER OF BOTH CEREBRAL HEMISPHERES IS PROBABLY SUGGESTIVE OF EITHER PERIVENTRICULAR WHITE MATTER DISEASE OR ATYPICAL MANIFESTATION OF DEMYELINATING PROCESS SUCH AS MULTIPLE SCLEROSIS."
Cervical Spine: Compressed disk with degenerative changes Thoracic MRI: Normal Spinal Tap: Normal Evoked Potentials: Normal
Blood work: All normal: TFT-Thyroid, PTH- parathyroid, B12, electrolytes (K Pa Ca), CRP, 25 hydroxy vitamin D, Acetylcholine Receptor Abs(binding, blocking, modulating)-rules out Myasthenia Gravis
My spinal tap also came back normal.
My neurologist also doesn’t think that it is Charcot Marie Tooth anymore and basically said "I don’t know what’s going on with you".
So basically, aside from continuing muscle weakness, some cramping in my hands and feet and throat muscle weakness, I don’t have anything new. I don’t have any pain at all and haven’t had any of the fatigue return or any new episodes of vision loss either. So it seems to me that my case should be easy to figure out, especially compared to some of the people that write in to the forums on here, God Bless you all!
Can a doctor here render an "unofficial opinion" of my symptoms and maybe guide me as to what to do and where to go next, if anything? I am scheduled for another follow-up with my neurologist in March, 2008, but I am concerned that this may be as serious as ALS or that I should at least be receiving treatment for MS, if this indeed is the case.
My neurologist has also suggested that this may be a virus that has attacked my muscles, but he changed his mind about doing a muscle biopsy the last time I saw him. Maybe in March, he said.
And one last thing, my older (43 year old) sister, has very recently begun to experience odd sensations in her left leg and to a lesser degree, her right. After going to her PCP (in another state) and having an MRI completed, it was discovered that she has two lesions on her brain, as well. She is in the process now of scheduling a follow-up with a Neurologist in her home town.
Can someone share with me their experience and/or give me some medical advice---unofficial, of course?
Thanks, and please take good care of yourselves, everyone out there.
