Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Sara, prior to Stills I had 2 migraines in my life, neither of which lasted more than a few hours. I did have the occasional headache, but they were normal and were easily defeated with Nuprin or Advil. The first day I ever became violently ill was in July of 1990, and the headache was unbearable. I had a few of them for another year and than they seemed to vanish, like magic. That lasted until January of 2004 when I woke up with a fever that topped 107 @ home and 106.6 in the ER. The headaches are indescribable. I've had 6 or 7 spinal taps, with each one showing significant white blood cell counts but nothing ever grew on a culture. To this day the headaches are brutally painful, with no hope in sight. I've been to the best of the best until I ran out of $$$ trying to find a cure to them. the best way I can describe them is this.... push in on your eyes until it starts to become painful........than imagine that pain multiplied by 50 with the feeling of ones eyes being rammed out of their skull. I also do have pain in the forehead and temple region when they are bad. It is easily recognizable when they are bad as my face becomes very flush and my eyes swell almost totally closed. Please let me know if I can be of anymore help. I spent 13 days @ Jefferson Headache center, and if they can't figure it out...well than I know that I am FUBAR. Kirk. > ** > > > Hi Harry and everyone, > I am new to the group and found your post while searching for others who > had meningitis and encephalitis. I also had two hospitalizations- the first > for viral meningitis, and two data later, I became encephalopatic and was > in the neuro ICU for five days, and in the hospital for a total of 3 weeks > while they tried to figure out why I still had a fever. Then they figured > out it was Stills. They believe the Stills created the meningoencephalitis, > and that it could continue to do so in the future. This was in April 2012. > > I was finally released on 60mg of Prednisone, and later, we added > methotrexate. Currently, I am on 20mg weekly mtx and 20mg Medrol. it's only > kind of working, and the tapering stinks, but I don't have to tell you guys > that! > > My main concern is my headaches. I have them every day. I have read all > about Kirk's horrible experience, and I feel terrible for him. I did wonder > if he ever had migraines prior to the Stills? (I did but they were under > control-1 a quarter until the meningitis). I am wondering if Harry's Stills > presents in the brain and cns as they believe mine does. I would like to > learn more about his experience. > > I do not have any arthritis (yet). I only have a burning sensation in the > palms of my hands which they think might be neuropathy. Neither the mtx or > steroid help. I do occasionally get fevers, and of course there is the > fatigue. > > I am seeing my rheumy for Stlls and a neuro for the headaches. They are > trying some migraine preventatives to address the headaches (nortiptyline, > propranolol and depakote) but so far, not much luck. As my CRP increases, > so do my headaches, so I think it is a systematic problem. > > Does anyone have any experience with these headaches/meningitis or > encephalopathy? > > I did think of seeing Dr. Cush because of the rare manifestation of the > disease. Thanks! > > Sara > > > > > > Dear Group, > > I am a 53 year old male with recently diagnosed Stills Disease. I just > finished 2 hospitalizations and the diagnosis was made the second time > > around. The first hospitalization included 8 days in the ICU with > meningo-encephalitis of unknown origin. > > I am currently on a tapering steroid dose and most of my symptoms have > disappeared except for those related to anemia. > > I hope to return to work in December on a gradual basis. > > I look forward to sharing my experiences, feelings, and any pertinent > medical information with all. > > Sincerely, > > Harry S.. Cyclura@... > > __________________________________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Sara, prior to Stills I had 2 migraines in my life, neither of which lasted more than a few hours. I did have the occasional headache, but they were normal and were easily defeated with Nuprin or Advil. The first day I ever became violently ill was in July of 1990, and the headache was unbearable. I had a few of them for another year and than they seemed to vanish, like magic. That lasted until January of 2004 when I woke up with a fever that topped 107 @ home and 106.6 in the ER. The headaches are indescribable. I've had 6 or 7 spinal taps, with each one showing significant white blood cell counts but nothing ever grew on a culture. To this day the headaches are brutally painful, with no hope in sight. I've been to the best of the best until I ran out of $$$ trying to find a cure to them. the best way I can describe them is this.... push in on your eyes until it starts to become painful........than imagine that pain multiplied by 50 with the feeling of ones eyes being rammed out of their skull. I also do have pain in the forehead and temple region when they are bad. It is easily recognizable when they are bad as my face becomes very flush and my eyes swell almost totally closed. Please let me know if I can be of anymore help. I spent 13 days @ Jefferson Headache center, and if they can't figure it out...well than I know that I am FUBAR. Kirk. > ** > > > Hi Harry and everyone, > I am new to the group and found your post while searching for others who > had meningitis and encephalitis. I also had two hospitalizations- the first > for viral meningitis, and two data later, I became encephalopatic and was > in the neuro ICU for five days, and in the hospital for a total of 3 weeks > while they tried to figure out why I still had a fever. Then they figured > out it was Stills. They believe the Stills created the meningoencephalitis, > and that it could continue to do so in the future. This was in April 2012. > > I was finally released on 60mg of Prednisone, and later, we added > methotrexate. Currently, I am on 20mg weekly mtx and 20mg Medrol. it's only > kind of working, and the tapering stinks, but I don't have to tell you guys > that! > > My main concern is my headaches. I have them every day. I have read all > about Kirk's horrible experience, and I feel terrible for him. I did wonder > if he ever had migraines prior to the Stills? (I did but they were under > control-1 a quarter until the meningitis). I am wondering if Harry's Stills > presents in the brain and cns as they believe mine does. I would like to > learn more about his experience. > > I do not have any arthritis (yet). I only have a burning sensation in the > palms of my hands which they think might be neuropathy. Neither the mtx or > steroid help. I do occasionally get fevers, and of course there is the > fatigue. > > I am seeing my rheumy for Stlls and a neuro for the headaches. They are > trying some migraine preventatives to address the headaches (nortiptyline, > propranolol and depakote) but so far, not much luck. As my CRP increases, > so do my headaches, so I think it is a systematic problem. > > Does anyone have any experience with these headaches/meningitis or > encephalopathy? > > I did think of seeing Dr. Cush because of the rare manifestation of the > disease. Thanks! > > Sara > > > > > > Dear Group, > > I am a 53 year old male with recently diagnosed Stills Disease. I just > finished 2 hospitalizations and the diagnosis was made the second time > > around. The first hospitalization included 8 days in the ICU with > meningo-encephalitis of unknown origin. > > I am currently on a tapering steroid dose and most of my symptoms have > disappeared except for those related to anemia. > > I hope to return to work in December on a gradual basis. > > I look forward to sharing my experiences, feelings, and any pertinent > medical information with all. > > Sincerely, > > Harry S.. Cyclura@... > > __________________________________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Sara, prior to Stills I had 2 migraines in my life, neither of which lasted more than a few hours. I did have the occasional headache, but they were normal and were easily defeated with Nuprin or Advil. The first day I ever became violently ill was in July of 1990, and the headache was unbearable. I had a few of them for another year and than they seemed to vanish, like magic. That lasted until January of 2004 when I woke up with a fever that topped 107 @ home and 106.6 in the ER. The headaches are indescribable. I've had 6 or 7 spinal taps, with each one showing significant white blood cell counts but nothing ever grew on a culture. To this day the headaches are brutally painful, with no hope in sight. I've been to the best of the best until I ran out of $$$ trying to find a cure to them. the best way I can describe them is this.... push in on your eyes until it starts to become painful........than imagine that pain multiplied by 50 with the feeling of ones eyes being rammed out of their skull. I also do have pain in the forehead and temple region when they are bad. It is easily recognizable when they are bad as my face becomes very flush and my eyes swell almost totally closed. Please let me know if I can be of anymore help. I spent 13 days @ Jefferson Headache center, and if they can't figure it out...well than I know that I am FUBAR. Kirk. > ** > > > Hi Harry and everyone, > I am new to the group and found your post while searching for others who > had meningitis and encephalitis. I also had two hospitalizations- the first > for viral meningitis, and two data later, I became encephalopatic and was > in the neuro ICU for five days, and in the hospital for a total of 3 weeks > while they tried to figure out why I still had a fever. Then they figured > out it was Stills. They believe the Stills created the meningoencephalitis, > and that it could continue to do so in the future. This was in April 2012. > > I was finally released on 60mg of Prednisone, and later, we added > methotrexate. Currently, I am on 20mg weekly mtx and 20mg Medrol. it's only > kind of working, and the tapering stinks, but I don't have to tell you guys > that! > > My main concern is my headaches. I have them every day. I have read all > about Kirk's horrible experience, and I feel terrible for him. I did wonder > if he ever had migraines prior to the Stills? (I did but they were under > control-1 a quarter until the meningitis). I am wondering if Harry's Stills > presents in the brain and cns as they believe mine does. I would like to > learn more about his experience. > > I do not have any arthritis (yet). I only have a burning sensation in the > palms of my hands which they think might be neuropathy. Neither the mtx or > steroid help. I do occasionally get fevers, and of course there is the > fatigue. > > I am seeing my rheumy for Stlls and a neuro for the headaches. They are > trying some migraine preventatives to address the headaches (nortiptyline, > propranolol and depakote) but so far, not much luck. As my CRP increases, > so do my headaches, so I think it is a systematic problem. > > Does anyone have any experience with these headaches/meningitis or > encephalopathy? > > I did think of seeing Dr. Cush because of the rare manifestation of the > disease. Thanks! > > Sara > > > > > > Dear Group, > > I am a 53 year old male with recently diagnosed Stills Disease. I just > finished 2 hospitalizations and the diagnosis was made the second time > > around. The first hospitalization included 8 days in the ICU with > meningo-encephalitis of unknown origin. > > I am currently on a tapering steroid dose and most of my symptoms have > disappeared except for those related to anemia. > > I hope to return to work in December on a gradual basis. > > I look forward to sharing my experiences, feelings, and any pertinent > medical information with all. > > Sincerely, > > Harry S.. Cyclura@... > > __________________________________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Hello Sara, I am very interested to hear about your presentation with Stills. I also had during my first hospitalization with Stills a secondary meningo-encephalitis. I had high fever , dementia, and changing levels of consciousness. I also ended in the medical ICU. At that time I was in my community hospital and the diagnostic work-up was directed towards an infective pathogen as the cause of illness. I had two lumbar punctures both of which revealed high protein levels and elevated WBC's but no pathogens noted on acute observation and final cultures. What was missed is that for my acute headaches while in the ICU I was given one dose of steroid. That dose of steroids provided a mini-remission of all symptoms. After it wore-off all symptoms returned including the encephalitis. After 10 days I improved enough to be discharged back to the medical floor. Eventually I was discharged home but without a diagnosis. When the symptoms returned including the cyclical fevers I was re-admitted. This time I was admitted to s Hopkins Hospital where I had trained. The intensivist who accepted my admission scheduled another complete diagnostic work-up including PET scans, bone marrow biopsies, and a repeat lumbar puncture. The last consultant I saw was the rheumatologist with a specialty in auto-immune vasculitis. He explained that all the symptoms I had were as a result of the underlying Stills. In addition the intensivist noted that the presentation I had experienced particularly the meningo-encephalitis was reasonably rare. He and the rheumatologist intended to present it at medical grand rounds. I was just glad I had received a diagnosis and a chance at improvement; that was back in November 2006. The first course of treatment I had was high dose steroids and NSAID's. Methotrexate for me resulted in G-I issues and was terminated early. I have since tapered off steroids. I currently receive a Rituxin infusion every 4 months. So far it keeps most of the severe symptoms of Stills in check. I still have daily pain in multiple joints, issues with my throat, and burning pain in both lower legs all of which are tolerable. Usually 3 months after an infusion I have to add steroids again because of increasing symptoms that are not tolerable. After the infusion I can begin tapering off. Prior to the onset of Stills I had a long history of migraine-like headaches controlled by mostly oral meds or infrequently by an injection. Since the diagnosis of Stills and particularly the use of biologic medications and steroids as needed the migraines have become very infrequent. Regarding arthritis the area that Stills seemed to effect the most with permanency has been my left ankle particularly the sub-talar joint. On my last x-ray it looks as if my sub-talar joint has fused. Prior to Stills I had no previous left ankle injury or symptoms. My lab work on the biologics is consistent with normal CRP's and ESR with a mild anemia and a reduced WBC secondary to the Rituxan. I hope my own history is of some help to you and others. Any questions please let me know Thank-you, Harry S. To: Stillsdisease From: singersara@... Date: Sat, 11 Aug 2012 07:37:00 +0000ss Subject: Meningitis and Stills Hi Harry and everyone, I am new to the group and found your post while searching for others who had meningitis and encephalitis. I also had two hospitalizations- the first for viral meningitis, and two data later, I became encephalopatic and was in the neuro ICU for five days, and in the hospital for a total of 3 weeks while they tried to figure out why I still had a fever. Then they figured out it was Stills. They believe the Stills created the meningoencephalitis, and that it could continue to do so in the future. This was in April 2012. I was finally released on 60mg of Prednisone, and later, we added methotrexate. Currently, I am on 20mg weekly mtx and 20mg Medrol. it's only kind of working, and the tapering stinks, but I don't have to tell you guys that! My main concern is my headaches. I have them every day. I have read all about Kirk's horrible experience, and I feel terrible for him. I did wonder if he ever had migraines prior to the Stills? (I did but they were under control-1 a quarter until the meningitis). I am wondering if Harry's Stills presents in the brain and cns as they believe mine does. I would like to learn more about his experience. I do not have any arthritis (yet). I only have a burning sensation in the palms of my hands which they think might be neuropathy. Neither the mtx or steroid help. I do occasionally get fevers, and of course there is the fatigue. I am seeing my rheumy for Stlls and a neuro for the headaches. They are trying some migraine preventatives to address the headaches (nortiptyline, propranolol and depakote) but so far, not much luck. As my CRP increases, so do my headaches, so I think it is a systematic problem. Does anyone have any experience with these headaches/meningitis or encephalopathy? I did think of seeing Dr. Cush because of the rare manifestation of the disease. Thanks! Sara > > Dear Group, > I am a 53 year old male with recently diagnosed Stills Disease. I just finished 2 hospitalizations and the diagnosis was made the second time > around. The first hospitalization included 8 days in the ICU with meningo-encephalitis of unknown origin. > I am currently on a tapering steroid dose and most of my symptoms have disappeared except for those related to anemia. > I hope to return to work in December on a gradual basis. > I look forward to sharing my experiences, feelings, and any pertinent medical information with all. > Sincerely, > Harry S.. Cyclura@... > __________________________________________________________ > Check the weather nationwide with MSN Search: Try it now! > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Hello Sara, I am very interested to hear about your presentation with Stills. I also had during my first hospitalization with Stills a secondary meningo-encephalitis. I had high fever , dementia, and changing levels of consciousness. I also ended in the medical ICU. At that time I was in my community hospital and the diagnostic work-up was directed towards an infective pathogen as the cause of illness. I had two lumbar punctures both of which revealed high protein levels and elevated WBC's but no pathogens noted on acute observation and final cultures. What was missed is that for my acute headaches while in the ICU I was given one dose of steroid. That dose of steroids provided a mini-remission of all symptoms. After it wore-off all symptoms returned including the encephalitis. After 10 days I improved enough to be discharged back to the medical floor. Eventually I was discharged home but without a diagnosis. When the symptoms returned including the cyclical fevers I was re-admitted. This time I was admitted to s Hopkins Hospital where I had trained. The intensivist who accepted my admission scheduled another complete diagnostic work-up including PET scans, bone marrow biopsies, and a repeat lumbar puncture. The last consultant I saw was the rheumatologist with a specialty in auto-immune vasculitis. He explained that all the symptoms I had were as a result of the underlying Stills. In addition the intensivist noted that the presentation I had experienced particularly the meningo-encephalitis was reasonably rare. He and the rheumatologist intended to present it at medical grand rounds. I was just glad I had received a diagnosis and a chance at improvement; that was back in November 2006. The first course of treatment I had was high dose steroids and NSAID's. Methotrexate for me resulted in G-I issues and was terminated early. I have since tapered off steroids. I currently receive a Rituxin infusion every 4 months. So far it keeps most of the severe symptoms of Stills in check. I still have daily pain in multiple joints, issues with my throat, and burning pain in both lower legs all of which are tolerable. Usually 3 months after an infusion I have to add steroids again because of increasing symptoms that are not tolerable. After the infusion I can begin tapering off. Prior to the onset of Stills I had a long history of migraine-like headaches controlled by mostly oral meds or infrequently by an injection. Since the diagnosis of Stills and particularly the use of biologic medications and steroids as needed the migraines have become very infrequent. Regarding arthritis the area that Stills seemed to effect the most with permanency has been my left ankle particularly the sub-talar joint. On my last x-ray it looks as if my sub-talar joint has fused. Prior to Stills I had no previous left ankle injury or symptoms. My lab work on the biologics is consistent with normal CRP's and ESR with a mild anemia and a reduced WBC secondary to the Rituxan. I hope my own history is of some help to you and others. Any questions please let me know Thank-you, Harry S. To: Stillsdisease From: singersara@... Date: Sat, 11 Aug 2012 07:37:00 +0000ss Subject: Meningitis and Stills Hi Harry and everyone, I am new to the group and found your post while searching for others who had meningitis and encephalitis. I also had two hospitalizations- the first for viral meningitis, and two data later, I became encephalopatic and was in the neuro ICU for five days, and in the hospital for a total of 3 weeks while they tried to figure out why I still had a fever. Then they figured out it was Stills. They believe the Stills created the meningoencephalitis, and that it could continue to do so in the future. This was in April 2012. I was finally released on 60mg of Prednisone, and later, we added methotrexate. Currently, I am on 20mg weekly mtx and 20mg Medrol. it's only kind of working, and the tapering stinks, but I don't have to tell you guys that! My main concern is my headaches. I have them every day. I have read all about Kirk's horrible experience, and I feel terrible for him. I did wonder if he ever had migraines prior to the Stills? (I did but they were under control-1 a quarter until the meningitis). I am wondering if Harry's Stills presents in the brain and cns as they believe mine does. I would like to learn more about his experience. I do not have any arthritis (yet). I only have a burning sensation in the palms of my hands which they think might be neuropathy. Neither the mtx or steroid help. I do occasionally get fevers, and of course there is the fatigue. I am seeing my rheumy for Stlls and a neuro for the headaches. They are trying some migraine preventatives to address the headaches (nortiptyline, propranolol and depakote) but so far, not much luck. As my CRP increases, so do my headaches, so I think it is a systematic problem. Does anyone have any experience with these headaches/meningitis or encephalopathy? I did think of seeing Dr. Cush because of the rare manifestation of the disease. Thanks! Sara > > Dear Group, > I am a 53 year old male with recently diagnosed Stills Disease. I just finished 2 hospitalizations and the diagnosis was made the second time > around. The first hospitalization included 8 days in the ICU with meningo-encephalitis of unknown origin. > I am currently on a tapering steroid dose and most of my symptoms have disappeared except for those related to anemia. > I hope to return to work in December on a gradual basis. > I look forward to sharing my experiences, feelings, and any pertinent medical information with all. > Sincerely, > Harry S.. Cyclura@... > __________________________________________________________ > Check the weather nationwide with MSN Search: Try it now! > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I was 16 years of age. Although it was viral my brain had already started to swell and we were told that if we had waited another 2 hours the damage would have been deadly. I had no other symptoms other than bad headaches until 2004 which was the onset of this disease. The fact that Stills may be able to create meningoencephalitis scares me. I still get horrible headaches but I keep an eye out for the neck pain. Thank you for sharing! Angie Sent from my iPad ________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I was 16 years of age. Although it was viral my brain had already started to swell and we were told that if we had waited another 2 hours the damage would have been deadly. I had no other symptoms other than bad headaches until 2004 which was the onset of this disease. The fact that Stills may be able to create meningoencephalitis scares me. I still get horrible headaches but I keep an eye out for the neck pain. Thank you for sharing! Angie Sent from my iPad ________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 I repeat everyone's recent 'wow' experience! My first hospital ER visit with Stills was thought to be encephalitis related to West Nile as we had been camping when it came on. My presentation was scary-level dehydration, high fever, inability to move any and all joints, severe pain, SED rate was 125 so they kept repeating it thinking they were wrong. Vomiting, loss of bladder and bowel control, blurred vision. And they sent me home after giving me an IV dose of prednisolone. So. I was back the next day in worse condition, and then they kept me for 2 weeks in isolation. I never connected the encephalitis to the whole mess until you all were talking about it. I finally found a rheumatologist who knew we were out of his league and sent me to the Mayo clinic where I was badly treated as I have reported in an earlier post, and finally got to University of Colorado hospital in Aurora. The doc who invented kineret practices there and his colleague is my main doc, Dr. Sterling West (great name, isn't it?). Stills is such a bad boy. So much can happen. Prayers go up for all of us who are working through the experience so docs can train on us! It's gotta be good for something, no? Blessings all around, *Holly * *hollydorst@...* * * > ** > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > was 16 years of age. Although it was viral my brain had already started to > swell and we were told that if we had waited another 2 hours the damage > would have been deadly. I had no other symptoms other than bad headaches > until 2004 which was the onset of this disease. The fact that Stills may be > able to create meningoencephalitis scares me. I still get horrible > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > Angie > > Sent from my iPad > > > ________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 I repeat everyone's recent 'wow' experience! My first hospital ER visit with Stills was thought to be encephalitis related to West Nile as we had been camping when it came on. My presentation was scary-level dehydration, high fever, inability to move any and all joints, severe pain, SED rate was 125 so they kept repeating it thinking they were wrong. Vomiting, loss of bladder and bowel control, blurred vision. And they sent me home after giving me an IV dose of prednisolone. So. I was back the next day in worse condition, and then they kept me for 2 weeks in isolation. I never connected the encephalitis to the whole mess until you all were talking about it. I finally found a rheumatologist who knew we were out of his league and sent me to the Mayo clinic where I was badly treated as I have reported in an earlier post, and finally got to University of Colorado hospital in Aurora. The doc who invented kineret practices there and his colleague is my main doc, Dr. Sterling West (great name, isn't it?). Stills is such a bad boy. So much can happen. Prayers go up for all of us who are working through the experience so docs can train on us! It's gotta be good for something, no? Blessings all around, *Holly * *hollydorst@...* * * > ** > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > was 16 years of age. Although it was viral my brain had already started to > swell and we were told that if we had waited another 2 hours the damage > would have been deadly. I had no other symptoms other than bad headaches > until 2004 which was the onset of this disease. The fact that Stills may be > able to create meningoencephalitis scares me. I still get horrible > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > Angie > > Sent from my iPad > > > ________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 I repeat everyone's recent 'wow' experience! My first hospital ER visit with Stills was thought to be encephalitis related to West Nile as we had been camping when it came on. My presentation was scary-level dehydration, high fever, inability to move any and all joints, severe pain, SED rate was 125 so they kept repeating it thinking they were wrong. Vomiting, loss of bladder and bowel control, blurred vision. And they sent me home after giving me an IV dose of prednisolone. So. I was back the next day in worse condition, and then they kept me for 2 weeks in isolation. I never connected the encephalitis to the whole mess until you all were talking about it. I finally found a rheumatologist who knew we were out of his league and sent me to the Mayo clinic where I was badly treated as I have reported in an earlier post, and finally got to University of Colorado hospital in Aurora. The doc who invented kineret practices there and his colleague is my main doc, Dr. Sterling West (great name, isn't it?). Stills is such a bad boy. So much can happen. Prayers go up for all of us who are working through the experience so docs can train on us! It's gotta be good for something, no? Blessings all around, *Holly * *hollydorst@...* * * > ** > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > was 16 years of age. Although it was viral my brain had already started to > swell and we were told that if we had waited another 2 hours the damage > would have been deadly. I had no other symptoms other than bad headaches > until 2004 which was the onset of this disease. The fact that Stills may be > able to create meningoencephalitis scares me. I still get horrible > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > Angie > > Sent from my iPad > > > ________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an idiot or two along the way! I know s Hopkins to be an excellent institute, but the Dr I had was a moron! Kirk. > I repeat everyone's recent 'wow' experience! My first hospital ER visit > with Stills was thought to be encephalitis related to West Nile as we had > been camping when it came on. My presentation was scary-level dehydration, > high fever, inability to move any and all joints, severe pain, SED rate was > 125 so they kept repeating it thinking they were wrong. Vomiting, loss of > bladder and bowel control, blurred vision. And they sent me home after > giving me an IV dose of prednisolone. So. I was back the next day in > worse condition, and then they kept me for 2 weeks in isolation. I never > connected the encephalitis to the whole mess until you all were talking > about it. > I finally found a rheumatologist who knew we were out of his league and > sent me to the Mayo clinic where I was badly treated as I have reported in > an earlier post, and finally got to University of Colorado hospital in > Aurora. The doc who invented kineret practices there and his colleague is > my main doc, Dr. Sterling West (great name, isn't it?). > Stills is such a bad boy. So much can happen. > Prayers go up for all of us who are working through the experience so docs > can train on us! It's gotta be good for something, no? > Blessings all around, > *Holly * > *hollydorst@...* > * > * > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > wrote: > > > ** > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > > was 16 years of age. Although it was viral my brain had already started > to > > swell and we were told that if we had waited another 2 hours the damage > > would have been deadly. I had no other symptoms other than bad headaches > > until 2004 which was the onset of this disease. The fact that Stills may > be > > able to create meningoencephalitis scares me. I still get horrible > > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > > > Angie > > > > Sent from my iPad > > > > > > ________________________________ > > > > Check the weather nationwide with MSN Search: Try it now! > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an idiot or two along the way! I know s Hopkins to be an excellent institute, but the Dr I had was a moron! Kirk. > I repeat everyone's recent 'wow' experience! My first hospital ER visit > with Stills was thought to be encephalitis related to West Nile as we had > been camping when it came on. My presentation was scary-level dehydration, > high fever, inability to move any and all joints, severe pain, SED rate was > 125 so they kept repeating it thinking they were wrong. Vomiting, loss of > bladder and bowel control, blurred vision. And they sent me home after > giving me an IV dose of prednisolone. So. I was back the next day in > worse condition, and then they kept me for 2 weeks in isolation. I never > connected the encephalitis to the whole mess until you all were talking > about it. > I finally found a rheumatologist who knew we were out of his league and > sent me to the Mayo clinic where I was badly treated as I have reported in > an earlier post, and finally got to University of Colorado hospital in > Aurora. The doc who invented kineret practices there and his colleague is > my main doc, Dr. Sterling West (great name, isn't it?). > Stills is such a bad boy. So much can happen. > Prayers go up for all of us who are working through the experience so docs > can train on us! It's gotta be good for something, no? > Blessings all around, > *Holly * > *hollydorst@...* > * > * > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > wrote: > > > ** > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > > was 16 years of age. Although it was viral my brain had already started > to > > swell and we were told that if we had waited another 2 hours the damage > > would have been deadly. I had no other symptoms other than bad headaches > > until 2004 which was the onset of this disease. The fact that Stills may > be > > able to create meningoencephalitis scares me. I still get horrible > > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > > > Angie > > > > Sent from my iPad > > > > > > ________________________________ > > > > Check the weather nationwide with MSN Search: Try it now! > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an idiot or two along the way! I know s Hopkins to be an excellent institute, but the Dr I had was a moron! Kirk. > I repeat everyone's recent 'wow' experience! My first hospital ER visit > with Stills was thought to be encephalitis related to West Nile as we had > been camping when it came on. My presentation was scary-level dehydration, > high fever, inability to move any and all joints, severe pain, SED rate was > 125 so they kept repeating it thinking they were wrong. Vomiting, loss of > bladder and bowel control, blurred vision. And they sent me home after > giving me an IV dose of prednisolone. So. I was back the next day in > worse condition, and then they kept me for 2 weeks in isolation. I never > connected the encephalitis to the whole mess until you all were talking > about it. > I finally found a rheumatologist who knew we were out of his league and > sent me to the Mayo clinic where I was badly treated as I have reported in > an earlier post, and finally got to University of Colorado hospital in > Aurora. The doc who invented kineret practices there and his colleague is > my main doc, Dr. Sterling West (great name, isn't it?). > Stills is such a bad boy. So much can happen. > Prayers go up for all of us who are working through the experience so docs > can train on us! It's gotta be good for something, no? > Blessings all around, > *Holly * > *hollydorst@...* > * > * > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > wrote: > > > ** > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > > was 16 years of age. Although it was viral my brain had already started > to > > swell and we were told that if we had waited another 2 hours the damage > > would have been deadly. I had no other symptoms other than bad headaches > > until 2004 which was the onset of this disease. The fact that Stills may > be > > able to create meningoencephalitis scares me. I still get horrible > > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > > > Angie > > > > Sent from my iPad > > > > > > ________________________________ > > > > Check the weather nationwide with MSN Search: Try it now! > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Same here for me with UCLA. I got the moron doctor too! Sent from my iPhone > You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an > idiot or two along the way! I know s Hopkins to be an excellent > institute, but the Dr I had was a moron! > Kirk. > > > > > I repeat everyone's recent 'wow' experience! My first hospital ER visit > > with Stills was thought to be encephalitis related to West Nile as we had > > been camping when it came on. My presentation was scary-level dehydration, > > high fever, inability to move any and all joints, severe pain, SED rate was > > 125 so they kept repeating it thinking they were wrong. Vomiting, loss of > > bladder and bowel control, blurred vision. And they sent me home after > > giving me an IV dose of prednisolone. So. I was back the next day in > > worse condition, and then they kept me for 2 weeks in isolation. I never > > connected the encephalitis to the whole mess until you all were talking > > about it. > > I finally found a rheumatologist who knew we were out of his league and > > sent me to the Mayo clinic where I was badly treated as I have reported in > > an earlier post, and finally got to University of Colorado hospital in > > Aurora. The doc who invented kineret practices there and his colleague is > > my main doc, Dr. Sterling West (great name, isn't it?). > > Stills is such a bad boy. So much can happen. > > Prayers go up for all of us who are working through the experience so docs > > can train on us! It's gotta be good for something, no? > > Blessings all around, > > *Holly * > > *hollydorst@...* > > * > > * > > > > > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > > wrote: > > > > > ** > > > > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > > > was 16 years of age. Although it was viral my brain had already started > > to > > > swell and we were told that if we had waited another 2 hours the damage > > > would have been deadly. I had no other symptoms other than bad headaches > > > until 2004 which was the onset of this disease. The fact that Stills may > > be > > > able to create meningoencephalitis scares me. I still get horrible > > > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > > > > > Angie > > > > > > Sent from my iPad > > > > > > > > > ________________________________ > > > > > Check the weather nationwide with MSN Search: Try it now! > > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Same here for me with UCLA. I got the moron doctor too! Sent from my iPhone > You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an > idiot or two along the way! I know s Hopkins to be an excellent > institute, but the Dr I had was a moron! > Kirk. > > > > > I repeat everyone's recent 'wow' experience! My first hospital ER visit > > with Stills was thought to be encephalitis related to West Nile as we had > > been camping when it came on. My presentation was scary-level dehydration, > > high fever, inability to move any and all joints, severe pain, SED rate was > > 125 so they kept repeating it thinking they were wrong. Vomiting, loss of > > bladder and bowel control, blurred vision. And they sent me home after > > giving me an IV dose of prednisolone. So. I was back the next day in > > worse condition, and then they kept me for 2 weeks in isolation. I never > > connected the encephalitis to the whole mess until you all were talking > > about it. > > I finally found a rheumatologist who knew we were out of his league and > > sent me to the Mayo clinic where I was badly treated as I have reported in > > an earlier post, and finally got to University of Colorado hospital in > > Aurora. The doc who invented kineret practices there and his colleague is > > my main doc, Dr. Sterling West (great name, isn't it?). > > Stills is such a bad boy. So much can happen. > > Prayers go up for all of us who are working through the experience so docs > > can train on us! It's gotta be good for something, no? > > Blessings all around, > > *Holly * > > *hollydorst@...* > > * > > * > > > > > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > > wrote: > > > > > ** > > > > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > > > was 16 years of age. Although it was viral my brain had already started > > to > > > swell and we were told that if we had waited another 2 hours the damage > > > would have been deadly. I had no other symptoms other than bad headaches > > > until 2004 which was the onset of this disease. The fact that Stills may > > be > > > able to create meningoencephalitis scares me. I still get horrible > > > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > > > > > Angie > > > > > > Sent from my iPad > > > > > > > > > ________________________________ > > > > > Check the weather nationwide with MSN Search: Try it now! > > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Same here for me with UCLA. I got the moron doctor too! Sent from my iPhone > You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an > idiot or two along the way! I know s Hopkins to be an excellent > institute, but the Dr I had was a moron! > Kirk. > > > > > I repeat everyone's recent 'wow' experience! My first hospital ER visit > > with Stills was thought to be encephalitis related to West Nile as we had > > been camping when it came on. My presentation was scary-level dehydration, > > high fever, inability to move any and all joints, severe pain, SED rate was > > 125 so they kept repeating it thinking they were wrong. Vomiting, loss of > > bladder and bowel control, blurred vision. And they sent me home after > > giving me an IV dose of prednisolone. So. I was back the next day in > > worse condition, and then they kept me for 2 weeks in isolation. I never > > connected the encephalitis to the whole mess until you all were talking > > about it. > > I finally found a rheumatologist who knew we were out of his league and > > sent me to the Mayo clinic where I was badly treated as I have reported in > > an earlier post, and finally got to University of Colorado hospital in > > Aurora. The doc who invented kineret practices there and his colleague is > > my main doc, Dr. Sterling West (great name, isn't it?). > > Stills is such a bad boy. So much can happen. > > Prayers go up for all of us who are working through the experience so docs > > can train on us! It's gotta be good for something, no? > > Blessings all around, > > *Holly * > > *hollydorst@...* > > * > > * > > > > > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > > wrote: > > > > > ** > > > > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I > > > was 16 years of age. Although it was viral my brain had already started > > to > > > swell and we were told that if we had waited another 2 hours the damage > > > would have been deadly. I had no other symptoms other than bad headaches > > > until 2004 which was the onset of this disease. The fact that Stills may > > be > > > able to create meningoencephalitis scares me. I still get horrible > > > headaches but I keep an eye out for the neck pain. Thank you for sharing! > > > > > > Angie > > > > > > Sent from my iPad > > > > > > > > > ________________________________ > > > > > Check the weather nationwide with MSN Search: Try it now! > > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Hello Everyone, Thank you so much for taking the time to share your stories with me. It looks like I might need to do some elaborating. I hope it is helpful. Before I do that, I have found a couple of case studies about Meningitis and Stills as well as Stills and the CNS manifestations. How do I go about sharing these pdfs? Here goes more info: I'm a 34 year-old married white female with a history of migraine headaches. They typically present with nausea, sensitivity to smell and light, and rarely, aura. Prior to Stills, at one point I had three a week, but over the last year, no more than one a quarter. Prior to the meningitis, I was on 50mg of Nortriptyline daily as a preventative measure, and occasionally I would take Immetrex if I had a really bad one which was rare. I also have a history of hypothyroidism and they suspect early Crohn's disease (ileum only) but the biopsy has not yet confirmed it. I was being treated for Crohn's with Pentasa prior to the Meningitis. January 1 of 2012, I awoke with a weird sensation in the palms of both of my hands. They itched badly and were red for several days. Then it turned into a burning/stinging pain (but it was not in my joints, it was in the bottom half of my palm (and fleshy area by my thumb). I saw two rheumatologists, and both suspected it was related to the Crohn's. They ran the usual tests. I guess the important points are: ESR 100, CRP double the normal, and negative ANA. By March, they decided to try switching me to sulfasalazine. The first week at one pill a day was fine, and the second week at two pills a day I started to get the excruciating headaches. I was told to discontinue the medication until symptoms resolved, and then restart at 2 per day. I did. When I re-started, the headaches came back, I started throwing up, and my fever was 103.6. At that point, I stopped taking it. We still wonder if the meningitis was a reaction to sulfa... Anyway, my mother is an ER physician, and obviously we knew to go to the ER with these symptoms. The LP showed elevated WBC (32 & 52), but glucose and protein were in normal range. I was treated with antibiotics for 5 days in the hospital, and I remember the worst head and neck pain of my life. My fever stabilized, and they sent me home. (Later I guess they found some bandemia- whatever that means). The next day, my husband found me in bed not making any sense and acting like a toddler. I wouldn't take my temperature or get in the car to go to the ER (different hospital this time where all my doctors are). Finally he got me there. I do not remember that day or the next five after it. They did another LP. This time, the glucose CSF was low, protein CSF was high, CSF WBC was 177(H) and CSF Lymphs were low. They had neurologists, ID, internists, rheumatologists etc..., and no one could figure out what was wrong. (I was in the neuro ICU at this point, looking at curtains and asking what they were--if that gives you any idea how out of it I was.) They worked under the assumption that I had a partially treated bacterial meningitis, and put me on Vancomycin, Rosephan and Dexamethasone (I think). They ran every blood test under the sun. Seriously, my chart was the size of a phone book. MRI revealed nothing to suggest acute infarction, but numerous bihemispheric punctate FLAIR hyper intensities in the deep white matter which may indicate demyelinating disease or migraine headaches. Cerebral Arteriogram revealed no evidence of vasculitis, there was a 2mm left posterior communicating artery infundibulum, and visible enhancement of the inferior rectus muscle of the left orbit of unknown significance. EEG was normal and DX of Chest also normal. So after I started to bounce back and got out of the ICU, every night I would get these fevers (with redness on my chest and face) and when the fever would come, I would become confused again not able to answer questions like what month it was or what hospital I was in. It was very scary. When the fever went away, so did the confusion. Finally a genius rheumatologist (yes, who studied at 's Hopkins, Yale and Stanford) heard about me through a resident and he knew it was Still's. He put me on 125mg of solumedrol twice daily in the hospital, and on the fourth day, the fever finally went away. I was released on 60 mg of prednisone daily and the remainder of all of my antibiotics for the possible bacterial infection. Three weeks later I went for a checkup, and that was the best I've felt since. At that point we started the Prednisone taper, and he added 15mg of MTX. Upon visiting with my neurologist several weeks later, he said he believes I actually had meningo-encephalitis, and he agreed with my rheumatologist that it came from the Still's disease which actually started in January with the hand pain. He expressed how very dangerous this manifestation is, and that I should take a combination of head, neck, fever and nausea very seriously. My CRP started to climb as we tapered the Prednisone, and the headaches are just never ending. I'm starting to learn to just " deal " with them. I did okay until I got down to 20mg of Prednisone, and then the head and neck pain got really bad with the nausea and all. I went to the ER, and the LP revealed normal Glucose and Protein CSF, High CSF lymphs and O CSF WBC count. They tried all sorts of drugs to help me, and nothing really worked. CRP was 5x what it was supposed to be that day. So, they switched me over to Medrol and upped the dosage a little. Now we are tapering again, and this week I'm going to 18mg of Medrol which is what, 20.5 of the Prednisone, so we will see how it goes. My CRP is starting to climb again, of course. I'm not sure the MTX is doing much for me. I find it strange that the hand pain is exactly the same (but tolerable) and that was the symptom that started it all. I have some form of headache literally every day and about one per week that makes me utterly miserable with pain and nausea. Also, I'm still in bed about half of the time which seems excessive to me after being out of the hospital for three months. I know I am inpatient. I have read about gabapentin, and I asked about that one. He wanted to try the combo of Propranolol and Depakote along with the nortriptyline. Perhaps the depakote as a migraine preventative will work, I just don't know. (I failed to mention, my neuro is a migraine specialist). I am certainly ready to get back to my life. I am the President of a start-up venture which entails a lot of work and a lot of stress. My brain has not been working at top speed, and it is terribly frustrating and embarrassing. I've tried doing things to get it back into shape, and it was working for a while, but over the last couple of weeks, I have had serious brain fog. I've been forgetting things, misreading words, stumbling over my speech, losing balance etc.. Not good. My face is the size of a beach ball (truly, they told me they'd never seen a prednisone reaction like it at the doctor yesterday!), and that is also embarrassing. Haha. I guess all we can really do is grin and bear it and hope they figure out a way to make the symptoms less severe. It concerns me that not much is known about the combo of CNS and Stills and I wish my neuro and rheumatologist would collaborate a little more on my case, but perhaps that's just not the way it is done. All I know is that I don't want to be encephalopathic ever again. Scary stuff. Now to make sense of what is the " new normal " for me, my career, my family and my life! I guess only time will tell. I will shut up know. Thanks for listening and for sharing your experiences. Sara > > > > > > Dear Group, > > > I am a 53 year old male with recently diagnosed Stills Disease. I just finished 2 hospitalizations and the diagnosis was made the second time > > > around. The first hospitalization included 8 days in the ICU with meningo-encephalitis of unknown origin. > > > I am currently on a tapering steroid dose and most of my symptoms have disappeared except for those related to anemia. > > > I hope to return to work in December on a gradual basis. > > > I look forward to sharing my experiences, feelings, and any pertinent medical information with all. > > > Sincerely, > > > Harry S.. Cyclura@ > > > __________________________________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Hello Everyone, Thank you so much for taking the time to share your stories with me. It looks like I might need to do some elaborating. I hope it is helpful. Before I do that, I have found a couple of case studies about Meningitis and Stills as well as Stills and the CNS manifestations. How do I go about sharing these pdfs? Here goes more info: I'm a 34 year-old married white female with a history of migraine headaches. They typically present with nausea, sensitivity to smell and light, and rarely, aura. Prior to Stills, at one point I had three a week, but over the last year, no more than one a quarter. Prior to the meningitis, I was on 50mg of Nortriptyline daily as a preventative measure, and occasionally I would take Immetrex if I had a really bad one which was rare. I also have a history of hypothyroidism and they suspect early Crohn's disease (ileum only) but the biopsy has not yet confirmed it. I was being treated for Crohn's with Pentasa prior to the Meningitis. January 1 of 2012, I awoke with a weird sensation in the palms of both of my hands. They itched badly and were red for several days. Then it turned into a burning/stinging pain (but it was not in my joints, it was in the bottom half of my palm (and fleshy area by my thumb). I saw two rheumatologists, and both suspected it was related to the Crohn's. They ran the usual tests. I guess the important points are: ESR 100, CRP double the normal, and negative ANA. By March, they decided to try switching me to sulfasalazine. The first week at one pill a day was fine, and the second week at two pills a day I started to get the excruciating headaches. I was told to discontinue the medication until symptoms resolved, and then restart at 2 per day. I did. When I re-started, the headaches came back, I started throwing up, and my fever was 103.6. At that point, I stopped taking it. We still wonder if the meningitis was a reaction to sulfa... Anyway, my mother is an ER physician, and obviously we knew to go to the ER with these symptoms. The LP showed elevated WBC (32 & 52), but glucose and protein were in normal range. I was treated with antibiotics for 5 days in the hospital, and I remember the worst head and neck pain of my life. My fever stabilized, and they sent me home. (Later I guess they found some bandemia- whatever that means). The next day, my husband found me in bed not making any sense and acting like a toddler. I wouldn't take my temperature or get in the car to go to the ER (different hospital this time where all my doctors are). Finally he got me there. I do not remember that day or the next five after it. They did another LP. This time, the glucose CSF was low, protein CSF was high, CSF WBC was 177(H) and CSF Lymphs were low. They had neurologists, ID, internists, rheumatologists etc..., and no one could figure out what was wrong. (I was in the neuro ICU at this point, looking at curtains and asking what they were--if that gives you any idea how out of it I was.) They worked under the assumption that I had a partially treated bacterial meningitis, and put me on Vancomycin, Rosephan and Dexamethasone (I think). They ran every blood test under the sun. Seriously, my chart was the size of a phone book. MRI revealed nothing to suggest acute infarction, but numerous bihemispheric punctate FLAIR hyper intensities in the deep white matter which may indicate demyelinating disease or migraine headaches. Cerebral Arteriogram revealed no evidence of vasculitis, there was a 2mm left posterior communicating artery infundibulum, and visible enhancement of the inferior rectus muscle of the left orbit of unknown significance. EEG was normal and DX of Chest also normal. So after I started to bounce back and got out of the ICU, every night I would get these fevers (with redness on my chest and face) and when the fever would come, I would become confused again not able to answer questions like what month it was or what hospital I was in. It was very scary. When the fever went away, so did the confusion. Finally a genius rheumatologist (yes, who studied at 's Hopkins, Yale and Stanford) heard about me through a resident and he knew it was Still's. He put me on 125mg of solumedrol twice daily in the hospital, and on the fourth day, the fever finally went away. I was released on 60 mg of prednisone daily and the remainder of all of my antibiotics for the possible bacterial infection. Three weeks later I went for a checkup, and that was the best I've felt since. At that point we started the Prednisone taper, and he added 15mg of MTX. Upon visiting with my neurologist several weeks later, he said he believes I actually had meningo-encephalitis, and he agreed with my rheumatologist that it came from the Still's disease which actually started in January with the hand pain. He expressed how very dangerous this manifestation is, and that I should take a combination of head, neck, fever and nausea very seriously. My CRP started to climb as we tapered the Prednisone, and the headaches are just never ending. I'm starting to learn to just " deal " with them. I did okay until I got down to 20mg of Prednisone, and then the head and neck pain got really bad with the nausea and all. I went to the ER, and the LP revealed normal Glucose and Protein CSF, High CSF lymphs and O CSF WBC count. They tried all sorts of drugs to help me, and nothing really worked. CRP was 5x what it was supposed to be that day. So, they switched me over to Medrol and upped the dosage a little. Now we are tapering again, and this week I'm going to 18mg of Medrol which is what, 20.5 of the Prednisone, so we will see how it goes. My CRP is starting to climb again, of course. I'm not sure the MTX is doing much for me. I find it strange that the hand pain is exactly the same (but tolerable) and that was the symptom that started it all. I have some form of headache literally every day and about one per week that makes me utterly miserable with pain and nausea. Also, I'm still in bed about half of the time which seems excessive to me after being out of the hospital for three months. I know I am inpatient. I have read about gabapentin, and I asked about that one. He wanted to try the combo of Propranolol and Depakote along with the nortriptyline. Perhaps the depakote as a migraine preventative will work, I just don't know. (I failed to mention, my neuro is a migraine specialist). I am certainly ready to get back to my life. I am the President of a start-up venture which entails a lot of work and a lot of stress. My brain has not been working at top speed, and it is terribly frustrating and embarrassing. I've tried doing things to get it back into shape, and it was working for a while, but over the last couple of weeks, I have had serious brain fog. I've been forgetting things, misreading words, stumbling over my speech, losing balance etc.. Not good. My face is the size of a beach ball (truly, they told me they'd never seen a prednisone reaction like it at the doctor yesterday!), and that is also embarrassing. Haha. I guess all we can really do is grin and bear it and hope they figure out a way to make the symptoms less severe. It concerns me that not much is known about the combo of CNS and Stills and I wish my neuro and rheumatologist would collaborate a little more on my case, but perhaps that's just not the way it is done. All I know is that I don't want to be encephalopathic ever again. Scary stuff. Now to make sense of what is the " new normal " for me, my career, my family and my life! I guess only time will tell. I will shut up know. Thanks for listening and for sharing your experiences. Sara > > > > > > Dear Group, > > > I am a 53 year old male with recently diagnosed Stills Disease. I just finished 2 hospitalizations and the diagnosis was made the second time > > > around. The first hospitalization included 8 days in the ICU with meningo-encephalitis of unknown origin. > > > I am currently on a tapering steroid dose and most of my symptoms have disappeared except for those related to anemia. > > > I hope to return to work in December on a gradual basis. > > > I look forward to sharing my experiences, feelings, and any pertinent medical information with all. > > > Sincerely, > > > Harry S.. Cyclura@ > > > __________________________________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2012 Report Share Posted August 12, 2012 Hi Kirk, Believe me, I understand what bad head pain feels like. I remember telling the nurse that if she wanted to jab an 8 " needle in my face (or eyes) to make it go away, to please do so. I get to the point where I cannot move my head at all (or turn over or get up or anything) or I get sick. Mine vary in terms of the sensation, but I have a feeling of fullness in my whole head where it simultaneously feels like it is exploding (outwards) and yet also being confined (vice-like) from the outside in. Often it is only the right half of my head, and my neck is involved too sometimes. I try really hard to avoid taking anything for as long as I can to avoid the rebound headaches, but sometimes you just have to do what you have to do. One little trick I have found lately (which you are probably aware of) has been the use of cold packs. They gave me some when I had meningitis, and often they help more than the meds. I like the blue gel ones you can get at sporting stores (for like $3 each) wrapped in a thin towel, and I also like the clay ones from Target and CVS. I have about 5 of them ready to go at any point in time, and they have been a savior for me for the last few months. I just put them over the top of my head, my forehead and even my neck. It helps a LOT! I will share with you that my neurologist believes these are migraines and they are presenting differently now because of the Stills. I don't know if you have ever tried any migraine preventatives, but that is the direction they seem to be going for me. Who knows if it will work. He has me keep a log of my headaches rating them fro, 1-5 daily in terms of severity. It is interesting to see the trends. Again, I'm not sure I'm much help, but I thought I would share what I could just in case. Hope your head is not hurting today. Sara > > > > > > Dear Group, > > > I am a 53 year old male with recently diagnosed Stills Disease. I just > > finished 2 hospitalizations and the diagnosis was made the second time > > > around. The first hospitalization included 8 days in the ICU with > > meningo-encephalitis of unknown origin. > > > I am currently on a tapering steroid dose and most of my symptoms have > > disappeared except for those related to anemia. > > > I hope to return to work in December on a gradual basis. > > > I look forward to sharing my experiences, feelings, and any pertinent > > medical information with all. > > > Sincerely, > > > Harry S.. Cyclura@ > > > __________________________________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2012 Report Share Posted August 12, 2012 Hi Kirk, Believe me, I understand what bad head pain feels like. I remember telling the nurse that if she wanted to jab an 8 " needle in my face (or eyes) to make it go away, to please do so. I get to the point where I cannot move my head at all (or turn over or get up or anything) or I get sick. Mine vary in terms of the sensation, but I have a feeling of fullness in my whole head where it simultaneously feels like it is exploding (outwards) and yet also being confined (vice-like) from the outside in. Often it is only the right half of my head, and my neck is involved too sometimes. I try really hard to avoid taking anything for as long as I can to avoid the rebound headaches, but sometimes you just have to do what you have to do. One little trick I have found lately (which you are probably aware of) has been the use of cold packs. They gave me some when I had meningitis, and often they help more than the meds. I like the blue gel ones you can get at sporting stores (for like $3 each) wrapped in a thin towel, and I also like the clay ones from Target and CVS. I have about 5 of them ready to go at any point in time, and they have been a savior for me for the last few months. I just put them over the top of my head, my forehead and even my neck. It helps a LOT! I will share with you that my neurologist believes these are migraines and they are presenting differently now because of the Stills. I don't know if you have ever tried any migraine preventatives, but that is the direction they seem to be going for me. Who knows if it will work. He has me keep a log of my headaches rating them fro, 1-5 daily in terms of severity. It is interesting to see the trends. Again, I'm not sure I'm much help, but I thought I would share what I could just in case. Hope your head is not hurting today. Sara > > > > > > Dear Group, > > > I am a 53 year old male with recently diagnosed Stills Disease. I just > > finished 2 hospitalizations and the diagnosis was made the second time > > > around. The first hospitalization included 8 days in the ICU with > > meningo-encephalitis of unknown origin. > > > I am currently on a tapering steroid dose and most of my symptoms have > > disappeared except for those related to anemia. > > > I hope to return to work in December on a gradual basis. > > > I look forward to sharing my experiences, feelings, and any pertinent > > medical information with all. > > > Sincerely, > > > Harry S.. Cyclura@ > > > __________________________________________________________ > > > Check the weather nationwide with MSN Search: Try it now! > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2012 Report Share Posted August 12, 2012 I've only lashed out physically at two Doctors, both times were in the ER when I was in total agony and they came right out and accused me of being a " seeker " ...and neither of them have any desire to cross my path again as once I have my mind set on taking someone down there is little anyone can do to stop me. Both of those idiots were disciplined, and one was eventually fired for his antics. When I went to s Hopkins the same thing would have happened (after I smashed the hell out of the asshole first) but luckily for them one of my best friends was in the office with me and diffuse the situation. He claimed that all of the other Dr's I had seen were idiots and that there was nothing wrong with me! That's as close to a quote as I can recollect at this time.....the sad part is that he didn't even review my records (which at the time were already close to 1000 pages!) and judged me by my appearance, which is before I blew up due to the steroids! Just as I know there are many horrible, lying & cheats in every field in life...there seems to be in the " elite " fields as well. Luckily for me I now have a team (5) of FANTASTIC Dr's! Kirk > ** > > > Same here for me with UCLA. I got the moron doctor too! > > Sent from my iPhone > > > > > You had the Mayo Clinic, I had s Hopkins! Seems everyone gets an > > idiot or two along the way! I know s Hopkins to be an excellent > > institute, but the Dr I had was a moron! > > Kirk. > > > > > > > > > I repeat everyone's recent 'wow' experience! My first hospital ER visit > > > with Stills was thought to be encephalitis related to West Nile as we > had > > > been camping when it came on. My presentation was scary-level > dehydration, > > > high fever, inability to move any and all joints, severe pain, SED > rate was > > > 125 so they kept repeating it thinking they were wrong. Vomiting, loss > of > > > bladder and bowel control, blurred vision. And they sent me home after > > > giving me an IV dose of prednisolone. So. I was back the next day in > > > worse condition, and then they kept me for 2 weeks in isolation. I > never > > > connected the encephalitis to the whole mess until you all were talking > > > about it. > > > I finally found a rheumatologist who knew we were out of his league and > > > sent me to the Mayo clinic where I was badly treated as I have > reported in > > > an earlier post, and finally got to University of Colorado hospital in > > > Aurora. The doc who invented kineret practices there and his colleague > is > > > my main doc, Dr. Sterling West (great name, isn't it?). > > > Stills is such a bad boy. So much can happen. > > > Prayers go up for all of us who are working through the experience so > docs > > > can train on us! It's gotta be good for something, no? > > > Blessings all around, > > > *Holly * > > > *hollydorst@...* > > > * > > > * > > > > > > > > > > > > On Sat, Aug 11, 2012 at 12:55 PM, Angie Salas > > > wrote: > > > > > > > ** > > > > > > > > > > > > Wow! This is crazy to hear. I had gotten viral meningitis in 1996! > When I > > > > was 16 years of age. Although it was viral my brain had already > started > > > to > > > > swell and we were told that if we had waited another 2 hours the > damage > > > > would have been deadly. I had no other symptoms other than bad > headaches > > > > until 2004 which was the onset of this disease. The fact that Stills > may > > > be > > > > able to create meningoencephalitis scares me. I still get horrible > > > > headaches but I keep an eye out for the neck pain. Thank you for > sharing! > > > > > > > > Angie > > > > > > > > Sent from my iPad > > > > > > > > > > > > ________________________________ > > > > > > Check the weather nationwide with MSN Search: Try it now! > > > > > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2012 Report Share Posted August 17, 2012 How strange. When I was a Jr in high school I had viral meningitis. I was in the hospital for three weeks with terrible headaches, high fevers, and very tired. I was diagnosed with AOSD when I was 52 years old. There seems to be some connection between the two diseases. a ________________________________ To: " Stillsdisease " <Stillsdisease > Sent: Saturday, August 11, 2012 2:55 PM Subject: Re: Meningitis and Stills  Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I was 16 years of age. Although it was viral my brain had already started to swell and we were told that if we had waited another 2 hours the damage would have been deadly. I had no other symptoms other than bad headaches until 2004 which was the onset of this disease. The fact that Stills may be able to create meningoencephalitis scares me. I still get horrible headaches but I keep an eye out for the neck pain. Thank you for sharing! Angie Sent from my iPad ________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2012 Report Share Posted August 17, 2012 How strange. When I was a Jr in high school I had viral meningitis. I was in the hospital for three weeks with terrible headaches, high fevers, and very tired. I was diagnosed with AOSD when I was 52 years old. There seems to be some connection between the two diseases. a ________________________________ To: " Stillsdisease " <Stillsdisease > Sent: Saturday, August 11, 2012 2:55 PM Subject: Re: Meningitis and Stills  Wow! This is crazy to hear. I had gotten viral meningitis in 1996! When I was 16 years of age. Although it was viral my brain had already started to swell and we were told that if we had waited another 2 hours the damage would have been deadly. I had no other symptoms other than bad headaches until 2004 which was the onset of this disease. The fact that Stills may be able to create meningoencephalitis scares me. I still get horrible headaches but I keep an eye out for the neck pain. Thank you for sharing! Angie Sent from my iPad ________________________________ > > Check the weather nationwide with MSN Search: Try it now! > > http://search.msn.com/results.aspx?q=weather & FORM=WLMTAG > > > > Quote Link to comment Share on other sites More sharing options...
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