Hello Everyone,
It's been some time since I last posted. But, here I am to say . . . I finally got the news. It took three rheumatologists and I'm on my way back to the third neurologist . . . who, by the way, when I first saw him told me I needed to be under the care of a rheumatologist (he was really a nice person) but told me with my blood work and symptoms I needed to see a rheumy first . . . then, if need be, come back and see him. (NOTE: my first rheumatologist I saw I only saw twice and little did I know he was on the right track by sending me to a neuro (only she didn't know anything . . . poked me with a safety pin and basically said in a nutshell "I DON'T KNOW WHAT TO TELL YOU"). . . . . . . . . . Then, we moved out of state so I wasn't able to follow-up with him (the 1st rheumy) . . . another story . . . BUT . . . bottom-line it seem it's CNS or NP lupus.
I could go on with a very, very, long story but all or most of you already know it. The pain, the anxiety, the "PLEASE BELIEVE ME, something is wrong"! I think the localized brain lesions finally did the trick. Not to mention the positive ANA's, significant neuro symptoms, and other positive blood work. It's not a good thing to have but, hey, to have the validation feels as though I've been vindicated to some degree. I'm an LPN and have been for 26 years and that's about how far back my symptoms started. I knew what was wrong the past few years and my medical knowledge is supposed to be limited compared to a doctor so, . . . why didn't they??? GOOD QUESTION! It's shows that everyone needs to hang in there and fight and please believe me when I say when things first started getting bad a few years ago . . . my GP and I just about went "toe to toe" . . . LITERALLY! . . . and I'm a pretty nice person, I think:lol: So, if you think you've been labeled a neurotic imbecile . . . you're not alone by any stretch of the imagination.
Again, my story is a long one and there may be some holes or missing info in the above and that's okay because what I think I really want to say is there are many of you who have been a strength to me on this site and I'm thankful for that. And, also, for those who are still "IN THE BATTLE" phase of a diagnosis . . . doggone, hang in there!! It's taken me many years although more significantly the past 8-9 years. My doctor (this last rheumy) did tell me the treatment for what I'm looking at may be worse than the illness itself and I'll may have to weigh that one out (chemo, I believe) but, I'll cross that bridge when I get to it. So, for now, I hope this may have helped those of you who are looking for answers to know the they're out there. Again, I turned to this site many a times and now I'm able to say I finally found the answers but it took the right doctors too. I hope the best for all that may read this and know there are many that will stand by you. Take care to all, Roberta
It's been some time since I last posted. But, here I am to say . . . I finally got the news. It took three rheumatologists and I'm on my way back to the third neurologist . . . who, by the way, when I first saw him told me I needed to be under the care of a rheumatologist (he was really a nice person) but told me with my blood work and symptoms I needed to see a rheumy first . . . then, if need be, come back and see him. (NOTE: my first rheumatologist I saw I only saw twice and little did I know he was on the right track by sending me to a neuro (only she didn't know anything . . . poked me with a safety pin and basically said in a nutshell "I DON'T KNOW WHAT TO TELL YOU"). . . . . . . . . . Then, we moved out of state so I wasn't able to follow-up with him (the 1st rheumy) . . . another story . . . BUT . . . bottom-line it seem it's CNS or NP lupus.
I could go on with a very, very, long story but all or most of you already know it. The pain, the anxiety, the "PLEASE BELIEVE ME, something is wrong"! I think the localized brain lesions finally did the trick. Not to mention the positive ANA's, significant neuro symptoms, and other positive blood work. It's not a good thing to have but, hey, to have the validation feels as though I've been vindicated to some degree. I'm an LPN and have been for 26 years and that's about how far back my symptoms started. I knew what was wrong the past few years and my medical knowledge is supposed to be limited compared to a doctor so, . . . why didn't they??? GOOD QUESTION! It's shows that everyone needs to hang in there and fight and please believe me when I say when things first started getting bad a few years ago . . . my GP and I just about went "toe to toe" . . . LITERALLY! . . . and I'm a pretty nice person, I think:lol: So, if you think you've been labeled a neurotic imbecile . . . you're not alone by any stretch of the imagination.
Again, my story is a long one and there may be some holes or missing info in the above and that's okay because what I think I really want to say is there are many of you who have been a strength to me on this site and I'm thankful for that. And, also, for those who are still "IN THE BATTLE" phase of a diagnosis . . . doggone, hang in there!! It's taken me many years although more significantly the past 8-9 years. My doctor (this last rheumy) did tell me the treatment for what I'm looking at may be worse than the illness itself and I'll may have to weigh that one out (chemo, I believe) but, I'll cross that bridge when I get to it. So, for now, I hope this may have helped those of you who are looking for answers to know the they're out there. Again, I turned to this site many a times and now I'm able to say I finally found the answers but it took the right doctors too. I hope the best for all that may read this and know there are many that will stand by you. Take care to all, Roberta