Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 , thanks for sending the sites on vasculitis. I think these are important for and Carol G to check out. In fact we should all take a look at them. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 , , Carol G., and RP group-- re: head/neck pain Here are three websites that may provide some additional information for you to consider for discussion at your next doctor's appt. if you think they have merit. Vasculitis (inflammation of the blood vessels), particularly CNSV (Central Nervous System Vasculitis-inflammation of the blood vessels in the brain, spinal cord and/or its covering), is yet another autoimmune disease. As we know, autoimmune diseases are multisystem, and if we have one disease it is common to have two. About 14 months ago (prior to my diagnosis) my pulmonologist kept asking me if I had headaches and/or neck pain. I know I'm a pain in the neck but never and still don't have headaches. He suspected I had vasculitis since he once had a patient with it. He only suspected RP when he did a bronchoscopy and saw my airways. But I did a little research on vasculitis and bookmarked this site: http://www.cnsv.net/cnsv! .. It describes symptoms of CNSV. Another site is http://www.vasculitis.med.jhu.edu. s Hopkins Vasculitis Center is one of the best in the nation. The article describes what it is and how to diagnosis it. But this site - http://www.utmb.edu/otoref/Grnds/Connect-Tissue-200002.pdf - is the site of a powerpoint presentation done by a resident and the professor/chairman of Otolaryngology at the Univ of Texas-Medical Branch on all types of connective tissue (including RP and vasculitis). I really found this one interesting. No wonder these diseases are difficult to diagnose and often overlap! Take care, (KC) Fw: RP Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi all, I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Thank you for two great sites. I am going to go researching around in them. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 I can't get any of the sites to pull up tonight. maybe its my computer did anyone else have trouble? Lu and saw my airways. But I did a little research on vasculitis and bookmarked this site: http://www.cnsv.net/cnsv. It describes symptoms of CNSV. Another site is http://www.vasculitis.med.jhu.edu/. s Hopkins Vasculitis Center is one of the best in the nation. The article describes what it is and how to diagnosis it. But this site - http://www.utmb.edu/otoref/Grnds/Connect-Tissue-200002.pdf - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 In a message dated 3/20/02 10:50:08 PM Pacific Standard Time, Lu1953@... writes: << can't get any of the sites to pull up tonight. maybe its my computer did anyone else have trouble? Lu >> I can't get them either Lu. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Kathleen, Are the headaches in your temple and to they affect your jaw? I have been having these headaches for quite some time. I also get severe eye pain with mine. The last one I had resulted in the loss of the central vision of my right eye. My Rheumy is going to schedule a biopsy for me because he thinks I might have Temporal Arteritis. I also have Vasculitis. Sandy I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Kathleen, those articles are so old! He really should pull them off the site, all they do is scare the crap out of everyone! Believe me, I was writing my will after I read them. But while RP is not curable, it IS treatable, which can suppress the symptoms for long periods of time. Mine started out with a 3 month flare from hell, but with the Pred (much as I HATE it) and the methotrexate, I only have problems on chemo day (nausea and migraine), other than that, I'm fine. So don't panic. It's just a matter of finding a good rheumy (which is critical) and getting on a medicine program that's right for you. I plan to live to be a ripe old age! RP is not going to do ME in. Judy O Re: Fw: RP/ /Carol G. Hi all, I also wonder if I don't have some degree of vasculitis, as I have terrible headaches (they feel sort of like my brain might short-circuit -- electrical in some weird way -- almost like a lowgrade hum...) neck pain, scalp tenderness and sores that appear on my scalp when everything is at its worst. :-( Didn't get my hair cut for the longest time until it cleared up... Anyway, these articles sort of freaked me out as they kept saying "fatal." Although I did see that there are two varieties, one not as bad. Since I have been bothered by this for over a year, maybe its the not-so-bad version, or maybe it's just TMJ. (fingers crossed!) Does anyone else relate to the weirdness of my headache description? My new rheumy did mention vasculitis in reference to the sores on my scalp, but she didn't seem overly worried... Kathleen (Tx) Roy got this message from our support site and I have never heard of this with RP. Can anyone help? If so, just answer here I will forward it to her. Thanks so much in advance, W size=2>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> size=2>In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: style="BORDER-LEFT: #0000ff 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px" TYPE="CITE">Hi! May name is . I've been diagnosed with RP since 93, though I had it for a long time before that. I am seeking some info on pressure on the head and neck related with RP. Has to do with circulation. Do you know anything or can you refer me to some article? Thanks. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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