Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 MRI head & c-spine bright & early this morning + CT-chest. These were to compliment the GA scan & blood test done last month...yep, that's because it took the third party payer 4 weeks to approve the MRI + 2 weeks for an available appointment. That's not what set me off. I understand that it is what it is and it's business for the payers. Despite the pounding headache, I went forward this morning with a smile on my face, knowing today held the promise of relief, even if temporary, from the beast. Little did I know that the day would take a nosedive in short order. Add the thump, thump, thump, brrrrrr of the MRI to the already pounding headache & by 9 AM it hurt to keep my eyes open. No problem, or so I thought, the meeting with the Dr to review the results shouldn't take too long, then I could head home, hopefully with rx in hand, to rest before heading off to work. Wrong, 3 hours later I made my second trip to the reception window to see if they forgot about me. Apparently, they are always triple booked on Mondays. Mental note to self...avoid Monday & afternoon appointments or bring a sleeping bag. 4 1/2 hours later I was finally in the exam room talking with the Dr. The MRI & CT were normal. No big surprise there...every scan has been 'normal' over the past 15 years. He then tells me that I don't have MS. Great, grand, wonderful! That's very comforting to know but the dx was sarcoid of the CNS, remember? Nope, nothing on the MRI or CT to suggest sarc, let alone neuro sarc. Great news, I'm cured, let me pass out cigars & invitations to the party...just wish it was that easy! What about the non-caseating granulomas, the elevated ACE levels, the bi-lateral facial palsy, the diplopia / blurred vision, the history of neurologic events, the headaches, the lupus pernio on my nose, & the rest of the issues that support the diagnosis??? I asked politely about the results of the GA scan & the blood test. A quizical look from the doctor as there aren't any other results in the file. He goes on line with the imaging center, looks up the report & low & behold the GA scan came back postive with findings that " ...are consistant with sarcoidosis. " He gives me another puzzled look... " What do we have you on right now? " NOTHING! I remind him that he was waiting for the results of the blood work & all of the scans before starting treatment with cyclosporine(dang short term memory...at least I think that was the drug)...that was six weeks & many hours of pain ago! " And how long have you had the headache? " This time around, about 10 weeks with maybe 4 or 5 days during that time when I wasn't tempted to curl up in the fetal position next to the commode on the bathroom floor. He scribbles on his pad & hands me a script for 5 days worth of prednisone despite my reminder that steriods turn me in Mr Hyde. " Well, we can't give you anything else until we run some blood tests to get a baseline. " I explained that I had those lab tests six weeks ago...the missing results, remember? " Well, that's all I can do for now. Schedule an appointment for next week. " No point in continuing the conversation. I took the rx, scheduled a follow up next week, then drove home to feed the cat before heading into work. My head feels as if it's in a vice & my eyes as if I were Curly & Moe was having a hayday poking me with his fingers. Perhaps the Dr was overwhelmed with all the extra patients. I'll give him the benefit of the doubt for now. The renewal of my FMLA paperwork is due shortly...until the headaches, fatigue & other 'fun' issues subside, I'll have to play nice in the sandbox or chance having to miss work on the worst of days without the protection of FMLA. If things don't improve when I speak to him next week I'll be looking for a new neurologist...my gosh, as if the beast is bad enough without all the other crap...can you tell that I'm very frustrated right now. Sorry about the rant. Thanks for letting me get that out. I know you folks have been down the same road & understand the frustration. Peace to all... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Yes Tony we have, and I totally understand you, been there! I have the added insult of being married to a Lawyer, in fact when seeing the ENT the first thing he said to me was, “oh I see your married to an attorney” yes I reply, well then we will need to get some more tests, before he even examines me! When I saw a neuro in Denver about 5 years ago, she was already to treat me after months of tests, much of what you are going through now, and on the last visit my husband came along, and some how it came out, he’s a “lawyer”, she pulls back the prescription, (this really happened), and said “I think I might have you see another Dr. just to get another opinion”. So I hear you loud and clear and I feel for you, if you believe prayers mine are with you, if not know I am sending you positive thoughts. Marl a Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Tony Sent: Monday, March 12, 2007 5:15 PM To: Neurosarcoidosis Subject: Tired & frustrated MRI head & c-spine bright & early this morning + CT-chest. These were to compliment the GA scan & blood test done last month...yep, that's because it took the third party payer 4 weeks to approve the MRI + 2 weeks for an available appointment. That's not what set me off. I understand that it is what it is and it's business for the payers. Despite the pounding headache, I went forward this morning with a smile on my face, knowing today held the promise of relief, even if temporary, from the beast. Little did I know that the day would take a nosedive in short order. Add the thump, thump, thump, brrrrrr of the MRI to the already pounding headache & by 9 AM it hurt to keep my eyes open. No problem, or so I thought, the meeting with the Dr to review the results shouldn't take too long, then I could head home, hopefully with rx in hand, to rest before heading off to work. Wrong, 3 hours later I made my second trip to the reception window to see if they forgot about me. Apparently, they are always triple booked on Mondays. Mental note to self...avoid Monday & afternoon appointments or bring a sleeping bag. 4 1/2 hours later I was finally in the exam room talking with the Dr. The MRI & CT were normal. No big surprise there...every scan has been 'normal' over the past 15 years. He then tells me that I don't have MS. Great, grand, wonderful! That's very comforting to know but the dx was sarcoid of the CNS, remember? Nope, nothing on the MRI or CT to suggest sarc, let alone neuro sarc. Great news, I'm cured, let me pass out cigars & invitations to the party...just wish it was that easy! What about the non-caseating granulomas, the elevated ACE levels, the bi-lateral facial palsy, the diplopia / blurred vision, the history of neurologic events, the headaches, the lupus pernio on my nose, & the rest of the issues that support the diagnosis??? I asked politely about the results of the GA scan & the blood test. A quizical look from the doctor as there aren't any other results in the file. He goes on line with the imaging center, looks up the report & low & behold the GA scan came back postive with findings that " ...are consistant with sarcoidosis. " He gives me another puzzled look... " What do we have you on right now? " NOTHING! I remind him that he was waiting for the results of the blood work & all of the scans before starting treatment with cyclosporine(dang short term memory...at least I think that was the drug)...that was six weeks & many hours of pain ago! " And how long have you had the headache? " This time around, about 10 weeks with maybe 4 or 5 days during that time when I wasn't tempted to curl up in the fetal position next to the commode on the bathroom floor. He scribbles on his pad & hands me a script for 5 days worth of prednisone despite my reminder that steriods turn me in Mr Hyde. " Well, we can't give you anything else until we run some blood tests to get a baseline. " I explained that I had those lab tests six weeks ago...the missing results, remember? " Well, that's all I can do for now. Schedule an appointment for next week. " No point in continuing the conversation. I took the rx, scheduled a follow up next week, then drove home to feed the cat before heading into work. My head feels as if it's in a vice & my eyes as if I were Curly & Moe was having a hayday poking me with his fingers. Perhaps the Dr was overwhelmed with all the extra patients. I'll give him the benefit of the doubt for now. The renewal of my FMLA paperwork is due shortly...until the headaches, fatigue & other 'fun' issues subside, I'll have to play nice in the sandbox or chance having to miss work on the worst of days without the protection of FMLA. If things don't improve when I speak to him next week I'll be looking for a new neurologist...my gosh, as if the beast is bad enough without all the other crap...can you tell that I'm very frustrated right now. Sorry about the rant. Thanks for letting me get that out. I know you folks have been down the same road & understand the frustration. Peace to all... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Hello Tired, Just had to answer your post. I have been there and done some of that. Not to the extreem that you have. But, I went all the way to baltimore to get a diagnosis and then my neuro at home decided that the specialist were wrong and it was "JUST" migraines. Took me another year to get treatment for my neurosarcoidosis. My heart goes out to you. Hang in there and look into new dr's. You don't have to change but it is always good to have one in the back of your mind. Huggs Tony wrote: MRI head & c-spine bright & early this morning + CT-chest. These were to compliment the GA scan & blood test done last month...yep, that's because it took the third party payer 4 weeks to approve the MRI + 2 weeks for an available appointment. That's not what set me off. I understand that it is what it is and it's business for the payers. Despite the pounding headache, I went forward this morning with a smile on my face, knowing today held the promise of relief, even if temporary, from the beast. Little did I know that the day would take a nosedive in short order. Add the thump, thump, thump, brrrrrr of the MRI to the already pounding headache & by 9 AM it hurt to keep my eyes open. No problem, or so I thought, the meeting with the Dr to review the results shouldn't take too long, then I could head home, hopefully with rx in hand, to rest before heading off to work. Wrong, 3 hours later I made my second trip to the reception window to see if they forgot about me. Apparently, they are always triple booked on Mondays. Mental note to self...avoid Monday & afternoon appointments or bring a sleeping bag.4 1/2 hours later I was finally in the exam room talking with the Dr. The MRI & CT were normal. No big surprise there...every scan has been 'normal' over the past 15 years. He then tells me that I don't have MS. Great, grand, wonderful! That's very comforting to know but the dx was sarcoid of the CNS, remember? Nope, nothing on the MRI or CT to suggest sarc, let alone neuro sarc. Great news, I'm cured, let me pass out cigars & invitations to the party...just wish it was that easy! What about the non-caseating granulomas, the elevated ACE levels, the bi-lateral facial palsy, the diplopia / blurred vision, the history of neurologic events, the headaches, the lupus pernio on my nose, & the rest of the issues that support the diagnosis??? I asked politely about the results of the GA scan & the blood test. A quizical look from the doctor as there aren't any other results in the file. He goes on line with the imaging center, looks up the report & low & behold the GA scan came back postive with findings that "...are consistant with sarcoidosis." He gives me another puzzled look..."What do we have you on right now?" NOTHING! I remind him that he was waiting for the results of the blood work & all of the scans before starting treatment with cyclosporine(dang short term memory...at least I think that was the drug)...that was six weeks & many hours of pain ago! "And how long have you had the headache?" This time around, about 10 weeks with maybe 4 or 5 days during that time when I wasn't tempted to curl up in the fetal position next to the commode on the bathroom floor.He scribbles on his pad & hands me a script for 5 days worth of prednisone despite my reminder that steriods turn me in Mr Hyde. "Well, we can't give you anything else until we run some blood tests to get a baseline." I explained that I had those lab tests six weeks ago...the missing results, remember? "Well, that's all I can do for now. Schedule an appointment for next week." No point in continuing the conversation. I took the rx, scheduled a follow up next week, then drove home to feed the cat before heading into work. My head feels as if it's in a vice & my eyes as if I were Curly & Moe was having a hayday poking me with his fingers. Perhaps the Dr was overwhelmed with all the extra patients. I'll give him the benefit of the doubt for now. The renewal of my FMLA paperwork is due shortly...until the headaches, fatigue & other 'fun' issues subside, I'll have to play nice in the sandbox or chance having to miss work on the worst of days without the protection of FMLA. If things don't improve when I speak to him next week I'll be looking for a new neurologist...my gosh, as if the beast is bad enough without all the other crap...can you tell that I'm very frustrated right now. Sorry about the rant. Thanks for letting me get that out. I know you folks have been down the same road & understand the frustration. Peace to all... Food fight? Enjoy some healthy debatein the Yahoo! Answers Food Drink Q&A. Quote Link to comment Share on other sites More sharing options...
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