Yeah, in addition to the Chiari. i had originally tested with an ANA of 1:1280 which is the highest my lab could test so it could have been higher, who knows. Usually there's the automatic inclination to think lupus with high ANA titres. After 2 years of Plaquenil, i still test with a positive ANA of 1:320. i tested consistently positive with Antiphospholipid (too clotty), but always negative with anti DSDNA. The antiphos. runs in my family, but so does MS. i have at least 4 relatives on my father's side with MS, all women, and their daughters all have it as well. This was something that the Rheumatologist wanted to rule out years ago but put off doing the lumbar puncture for some reason and my Neuro symptoms either got ignored or *wrongly* attributed to the Chiari. In May of this year, i was beginning what i thought was a bad lupus flare, and my right arm went numb all the way up to the shoulder, and then toward the spine. i went to an Urgent Care appt and they ordered an MRI and referred me to follow up with Neurology. When they sent the MRI report to my GP, the report noted no significant findings other than "minimal degenerative disc disease". When i went to Neuro, they were AGHAST that the lab tech missed a lesion on my spinal cord in roughly C4 area. So they repeated the brain MRI and added full spinal and did one with contrast and one without. While i was waiting for the results, both my big toes went numb on the bottom. Simple thing, but freaky, right? So once the results came they said the lesion was much larger and they wanted to do a spinal tap.
The spinal tap tested positive for MS, and this combined with the lesion and clinical findings (neuro exams, babinski reflex, etc) and family history made the conclusion. This week i had my first 5 day course of IV Steroid infusions (Solu-Medrol) (hopefully it will be a long time before another attack) and then the will start me on Betaseron injections within the next couple of weeks. This has been a difficult process for me since i feel like i am starting completely over with the whole "dealing with it" process and coming to terms, understanding, etc, but in some ways i feel a relief, as strange as that sounds, because now i know i will get the medication for my actual disease and these are actually disease-modifying drugs rather than the symptom band-aid that lupus treatments are. i am scared of being disabled and i know it is probably inevitable that i will be wheelchair bound at some point, but i know that the treatment i will get will at least be accurate and have some effect on the actual disease process and all i can do is hope that it is delayed as long as possible and that i don't go blind. i am angry that i have suffered for three solid years after the full onset without proper treatment, especially from world reknowned hospital with multiple Nobel laureates on faculty and staff, *BUT* at least now i know and i can start living my life accordingly and buddy up with my Neuro. i have to say, though, that i feel so mournful because the treatment, support and resources for patients with MS far surpass those for people living with lupus, and now that i am intangibly "leaving the lupus community" i feel that i am leaving people behind that don't have half the resources that MS patients do. Its a whole different world. So i guess i have so many conflicting emotions about it right now, but overall i have a guilty and suspicious sense of relief that the real answer has been found.
Thanks for your replies as always, and you are in my thoughts. :)
The spinal tap tested positive for MS, and this combined with the lesion and clinical findings (neuro exams, babinski reflex, etc) and family history made the conclusion.
This week i had my first 5 day course of IV Steroid infusions (Solu-Medrol) (hopefully it will be a long time before another attack) and then the will start me on Betaseron injections within the next couple of weeks.
This has been a difficult process for me since i feel like i am starting completely over with the whole "dealing with it" process and coming to terms, understanding, etc, but in some ways i feel a relief, as strange as that sounds, because now i know i will get the medication for my actual disease and these are actually disease-modifying drugs rather than the symptom band-aid that lupus treatments are. i am scared of being disabled and i know it is probably inevitable that i will be wheelchair bound at some point, but i know that the treatment i will get will at least be accurate and have some effect on the actual disease process and all i can do is hope that it is delayed as long as possible and that i don't go blind. i am angry that i have suffered for three solid years after the full onset without proper treatment, especially from world reknowned hospital with multiple Nobel laureates on faculty and staff, *BUT* at least now i know and i can start living my life accordingly and buddy up with my Neuro.
i have to say, though, that i feel so mournful because the treatment, support and resources for patients with MS far surpass those for people living with lupus, and now that i am intangibly "leaving the lupus community" i feel that i am leaving people behind that don't have half the resources that MS patients do. Its a whole different world. So i guess i have so many conflicting emotions about it right now, but overall i have a guilty and suspicious sense of relief that the real answer has been found.
Thanks for your replies as always, and you are in my thoughts. :)
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