Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi , I have just recently been diagnosed, but I'm wondering the same thing as this has been one of my bigger problems. I'm seeing my Rheumatologist on Monday, and was planning to ask if this could have something to do with the blood vessel involvement possibility of RP. We've not discussed this yet, and I've not come across any articles addressing this aspect specifically, but am still looking. I've had the pain and pressure in my head ,scalp and neck.My neurologist has me on Neurontin (he had never heard of RP!), and I'll be having another MRI of the head next week. I've also had generalized swelling, mainly of the face and neck with increased night sweats and daytime flushes, with no cause to be found. The drs don't think it's the Prednisone, and I wonder if it all has to do with a possible inflammation of the blood vessels. I'll let you know when I find out more, and I hope you'll do the same. Please fee free to email me directly if you'd like. Thanks for your question. I was hesitant to bring it up because I've never seen it discussed before. Hopefully we can find an answer. Take Care, Carol Giordano mgiordano@... 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 >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> In a message dated 3/2/02 7:07:51 AM Pacific Standard Time, Tutumambo writes: 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 I want to know if anyone finds anything out about this also. I have some of these same symptoms. I am not on pred right now. So it can't be that or at least for me it isn't. Hopefully we can all find answers. Take care Lu I've had the pain and pressure in my head ,scalp and neck.My neurologist has me on Neurontin (he had never heard of RP!), and I'll be having another MRI of the head next week. I've also had generalized swelling, mainly of the face and neck with increased night sweats and daytime flushes, with no cause to be found. The drs don't think it's the Prednisone, and I wonder if it all has to do with a possible inflammation of the blood vessels. I'll let you know when I find out more, and I Quote Link to comment Share on other sites More sharing options...
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