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We have a plan of attack.....
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<blockquote data-quote="timer lady" data-source="post: 152909" data-attributes="member: 393"><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>on the attack on my body.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>No diagnosis as of yet as the almost 10 months of prednisone is masking so much. And that same prednisone is killing me - literally. That is what Mayo doctor had to say on Tuesday. husband & I were dumbstruck at his brutality AND it got our attention. It also got the attention of my neuro doctor & GP here in the TC.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>The initial diagnosis no longer matters....... it's the Cushing's Disease that matters now.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>Prednisone is being titrated down by 5 mg. a week. At the same time, methotextrate (a chemotherapy drug) is being prescribed to treat the auto immune symptoms. This medication is used by rheumatologists to treat vasculitis, polymyosistis, dermamyosistis, & Susac syndrome (but at a lower dose than if I were being treated for cancer). All diagnosis's that have been made, dropped, made again, dropped again & are all off the board until further notice. </strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>Neuro doctor is handling the post herpetic, post meningitis, post CNS infection symptoms with strong pain medications & is increasing my neurontin & keppra.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>Just for shi$s & giggles, GP is treating the blood pressure & rapid pulse issues brought on the prednisone; she's also in charge of all the blood work & ordering further tests that need to be done while on the methotextrate.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>husband is to set up & monitor my medications as I keep screwing that up & there will be many changes done quickly. </strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>My new exercise routine. Walk about the living & dining room for one minute three times a day. If you hadn't guessed it, I'm extremely weak. I've been told it will get worse before it gets better.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>So Sunday, I'll be down to 45 mg/daily of prednisone. It will take approximately 2 1/2 months to d/c this stuff if my body doesn't go into adrenal crisis. At around 10 mgs of prednisone we will know if my body will start kicking in & doing this on it's own.</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>Last July 2nd this all started ~ my sed rate was over 120, my head felt as though it was going to explode, I was partially paralyzed & came home with a cane & a walker. I missed the tweedles 13th birthday because I was in the hospital. </strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>Finally a team of doctors that have taken charge & are no longer messing around. They are making no guarantees as to the level of recovery I will make & are encouraging me to apply for disability. </strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>I'd appreciate any positive thoughts, prayers & encouragement. I'm pretty down tonight. </strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong>Thanks for listening - just needed to "talk".</strong></span></span></span></p><p><span style="font-size: 12px"><span style="font-family: 'Franklin Gothic Medium'"><span style="color: Teal"><strong></strong></span></span></span></p></blockquote><p></p>
[QUOTE="timer lady, post: 152909, member: 393"] [SIZE=3][FONT=Franklin Gothic Medium][COLOR=Teal][B]on the attack on my body. No diagnosis as of yet as the almost 10 months of prednisone is masking so much. And that same prednisone is killing me - literally. That is what Mayo doctor had to say on Tuesday. husband & I were dumbstruck at his brutality AND it got our attention. It also got the attention of my neuro doctor & GP here in the TC. The initial diagnosis no longer matters....... it's the Cushing's Disease that matters now. Prednisone is being titrated down by 5 mg. a week. At the same time, methotextrate (a chemotherapy drug) is being prescribed to treat the auto immune symptoms. This medication is used by rheumatologists to treat vasculitis, polymyosistis, dermamyosistis, & Susac syndrome (but at a lower dose than if I were being treated for cancer). All diagnosis's that have been made, dropped, made again, dropped again & are all off the board until further notice. Neuro doctor is handling the post herpetic, post meningitis, post CNS infection symptoms with strong pain medications & is increasing my neurontin & keppra. Just for shi$s & giggles, GP is treating the blood pressure & rapid pulse issues brought on the prednisone; she's also in charge of all the blood work & ordering further tests that need to be done while on the methotextrate. husband is to set up & monitor my medications as I keep screwing that up & there will be many changes done quickly. My new exercise routine. Walk about the living & dining room for one minute three times a day. If you hadn't guessed it, I'm extremely weak. I've been told it will get worse before it gets better. So Sunday, I'll be down to 45 mg/daily of prednisone. It will take approximately 2 1/2 months to d/c this stuff if my body doesn't go into adrenal crisis. At around 10 mgs of prednisone we will know if my body will start kicking in & doing this on it's own. [/B][/COLOR][/FONT][/SIZE][SIZE=3][FONT=Franklin Gothic Medium][COLOR=Teal][B]Last July 2nd this all started ~ my sed rate was over 120, my head felt as though it was going to explode, I was partially paralyzed & came home with a cane & a walker. I missed the tweedles 13th birthday because I was in the hospital. Finally a team of doctors that have taken charge & are no longer messing around. They are making no guarantees as to the level of recovery I will make & are encouraging me to apply for disability. I'd appreciate any positive thoughts, prayers & encouragement. I'm pretty down tonight. Thanks for listening - just needed to "talk". [/B][/COLOR][/FONT][/SIZE] [/QUOTE]
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