Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Hi I think getting a diagnosis (and having it confirmed with MRI) is half the battle. Now you can proceed! I wish you the best and good luck with your rheumy tomorrow. Take Care Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 I have a tiny spot on my MRI. With my symptoms and history, she is almost 100% certain I have lupus cerebritis, which is essentially vasculitis within the brain. Am I lucky, or what? I get to go in later this week for an EEG, and a spinal tap on Monday to confirm. She is concerned that I may have some permanent damage which is causing seizures, which is why she ordered an EEG. She has also ordered an echocardiogram, since she suspects the heart may have been affected, as well. I am " completely disabled " for at least a month, until they confirm the diagnosis and begin treatment. I will be able to return to work only after they get the drug combination right to stop the tremors and speech impairment, and also stop the seizures. At leat I haven't lost consciousness, yet, though I've come close. I don't see my rheumy until tomorrow, so technically I don't have an " official " dx of SLE, but with all the stuff I've been dealing with in the last month or two, if he doesn't come up with that, I may slap him. The good news is that my work is willing to work with me, including allowing me to telecommute, since my neurologist told me flat out the hour-long commute must stop. I'm lucky I found this place...they have been nothing but supportive through all of this, and I've only been with them for a month, now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 , I am sorry about your news. You have really had a rough time lately. I am glad someone is looking into this, and can get you the help you need. That is really nice that your work is being really nice, that sure helps a lot. I will keep you in my prayers, and please keep us posted, Tawny > I have a tiny spot on my MRI. With my symptoms and history, she is > almost 100% certain I have lupus cerebritis, which is essentially > vasculitis within the brain. Am I lucky, or what? I get to go in > later this week for an EEG, and a spinal tap on Monday to confirm. > She is concerned that I may have some permanent damage which is > causing seizures, which is why she ordered an EEG. She has also > ordered an echocardiogram, since she suspects the heart may have > been affected, as well. > > I am " completely disabled " for at least a month, until they confirm > the diagnosis and begin treatment. I will be able to return to work > only after they get the drug combination right to stop the tremors > and speech impairment, and also stop the seizures. At leat I > haven't lost consciousness, yet, though I've come close. > > I don't see my rheumy until tomorrow, so technically I don't have > an " official " dx of SLE, but with all the stuff I've been dealing > with in the last month or two, if he doesn't come up with that, I > may slap him. > > The good news is that my work is willing to work with me, including > allowing me to telecommute, since my neurologist told me flat out > the hour-long commute must stop. I'm lucky I found this > place...they have been nothing but supportive through all of this, > and I've only been with them for a month, now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 , I am sorry about your news. You have really had a rough time lately. I am glad someone is looking into this, and can get you the help you need. That is really nice that your work is being really nice, that sure helps a lot. I will keep you in my prayers, and please keep us posted, Tawny > I have a tiny spot on my MRI. With my symptoms and history, she is > almost 100% certain I have lupus cerebritis, which is essentially > vasculitis within the brain. Am I lucky, or what? I get to go in > later this week for an EEG, and a spinal tap on Monday to confirm. > She is concerned that I may have some permanent damage which is > causing seizures, which is why she ordered an EEG. She has also > ordered an echocardiogram, since she suspects the heart may have > been affected, as well. > > I am " completely disabled " for at least a month, until they confirm > the diagnosis and begin treatment. I will be able to return to work > only after they get the drug combination right to stop the tremors > and speech impairment, and also stop the seizures. At leat I > haven't lost consciousness, yet, though I've come close. > > I don't see my rheumy until tomorrow, so technically I don't have > an " official " dx of SLE, but with all the stuff I've been dealing > with in the last month or two, if he doesn't come up with that, I > may slap him. > > The good news is that my work is willing to work with me, including > allowing me to telecommute, since my neurologist told me flat out > the hour-long commute must stop. I'm lucky I found this > place...they have been nothing but supportive through all of this, > and I've only been with them for a month, now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 In a message dated 8/25/2005 6:05:25 A.M. Eastern Daylight Time, writes: Just got back from the neurologist... , I am so very sorry that you have been having such a terrible time. I know it is good to finally get the diagnosis, but also frightening. You are most definitely in my thoughts and prayers. Love and Prayers, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 In a message dated 8/25/2005 6:05:25 A.M. Eastern Daylight Time, writes: Just got back from the neurologist... , I am so very sorry that you have been having such a terrible time. I know it is good to finally get the diagnosis, but also frightening. You are most definitely in my thoughts and prayers. Love and Prayers, Beth Quote Link to comment Share on other sites More sharing options...
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