I really feel what inf. u wrote is absolutely correct!!Me & my husband read ur msg & feel relieved that u'v faced so bravely for 20+ yrs.Hats off To you & all others who are facing similar complaints.
I have a long story of my daughter 24yrs old, in short ,she is a very healthy beautiful girl with lots of energy in life. She finished her undergraduation In Comp. engineering from India, stayed for 2yrs and left for her Masters in Comp.Engineering in Aug 2013 to Johns hopkins institute. Only after 2 mths of joining her course, she developed typical attack of Unilateral Optic neuritis, was admitted in Johns Hopkins Institute, where battery of investigations were done. She developed similar complaints in the other eye when hospitalised.
No brain & spinal cord lesions suggestive of MS wee detected, antibody for NMO was negative. Spinal tap(LP)negative, so they did a meningeal biopsy, all tests negative. Her vision improved to 6/6 in both eyes:thumbs_up, so was discharged on oral steroids.She resumed school. After few days of steroid withdrawal, she again developed loss of vision in Rt eye.Was again admitted.This time accidentally while doing USG & PET Scan, she was diagnosed Early Papillary thyroid carcinoma. Was operated , uneventful.2nd admission she did not respond to IV Steroids, so Plasmapheresis was done, for which she responded well. Again eye sight returned to 6/6.
She missed a term of college, returned to home town, Pune joined a job as an internship. She was started on Cellcept by JHU Neurologist & under guidance of Neurologist in Pune.When steroids were tapered she again developed recurrence, it responded to IV Steroids. Now is on Cellcept & 10mg Oral steroids. We are still confused with the diagnosis, as no MRI lesions, no antibodies to NMO. She has a very positive approach &hopefully plans to return to JHU to resume studies in Aug 2014. Will follow up in JHU.
But we, though both being doctors by profession are concerned of her diagnosis and whether Cellcept is acting and if she has relapse, what next? Our next concern is the relation of absolute lymphocyte count and cellcept response. Kindly let us know if anyone is aware of Cellcept monitoring. In all this we thank our stars that she was in Johns hopkins
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I have a long story of my daughter 24yrs old, in short ,she is a very healthy beautiful girl with lots of energy in life. She finished her undergraduation In Comp. engineering from India, stayed for 2yrs and left for her Masters in Comp.Engineering in Aug 2013 to Johns hopkins institute. Only after 2 mths of joining her course, she developed typical attack of Unilateral Optic neuritis, was admitted in Johns Hopkins Institute, where battery of investigations were done. She developed similar complaints in the other eye when hospitalised.
No brain & spinal cord lesions suggestive of MS wee detected, antibody for NMO was negative. Spinal tap(LP)negative, so they did a meningeal biopsy, all tests negative. Her vision improved to 6/6 in both eyes:thumbs_up, so was discharged on oral steroids.She resumed school. After few days of steroid withdrawal, she again developed loss of vision in Rt eye.Was again admitted.This time accidentally while doing USG & PET Scan, she was diagnosed Early Papillary thyroid carcinoma. Was operated , uneventful.2nd admission she did not respond to IV Steroids, so Plasmapheresis was done, for which she responded well. Again eye sight returned to 6/6.
She missed a term of college, returned to home town, Pune joined a job as an internship. She was started on Cellcept by JHU Neurologist & under guidance of Neurologist in Pune.When steroids were tapered she again developed recurrence, it responded to IV Steroids. Now is on Cellcept & 10mg Oral steroids. We are still confused with the diagnosis, as no MRI lesions, no antibodies to NMO. She has a very positive approach &hopefully plans to return to JHU to resume studies in Aug 2014. Will follow up in JHU.
But we, though both being doctors by profession are concerned of her diagnosis and whether Cellcept is acting and if she has relapse, what next? Our next concern is the relation of absolute lymphocyte count and cellcept response. Kindly let us know if anyone is aware of Cellcept monitoring. In all this we thank our stars that she was in Johns hopkins
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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