Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 I also Have neurosarcoidosis and noticed you mentioned a place in Seattle where you were receiving treatment, and I was wondering if you were in the Seattle area. I also live in Seattle and if you are if there is anything I can do to help you I would be very happy to help. I was diagnosed with Neuro sarc in 2004. Take Care, Matt in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 > > I also Have neurosarcoidosis and noticed you mentioned a place in Seattle where you were receiving treatment, and I was wondering if you were in the Seattle area. I also live in Seattle and if you are if there is anything I can do to help you I would be very happy to help. I was diagnosed with Neuro sarc in 2004. Take Care, Matt in Seattle > I am also in Seattle, on the Eastside. I have neuro sarc, pulmonary sarc and sarc in the eye is under investigation. I am seeing a neurologist on the Eastside and a sarc management specialist at UW medical Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I actually live in California. I just found the closest neuro. ophthalmologist specializing in Sarc. in Seattle.Neuroscience Institute, Dr. Hamilton . They are referral based only so your doctorwill need to fax or give them a call. I have not yet been seen but am desperate to get help with my eyes.May I ask how old you are? I am 40 and just diagnosed. Have you had a steady progression? I have.Thanks Matt,To: Neurosarcoidosis Sent: Tuesday, August 11, 2009 1:02:49 PMSubject: Re: Hi , > > I also Have neurosarcoidosis and noticed you mentioned a place in Seattle where you were receiving treatment, and I was wondering if you were in the Seattle area. I also live in Seattle and if you are if there is anything I can do to help you I would be very happy to help. I was diagnosed with Neuro sarc in 2004. Take Care, Matt in Seattle > I am also in Seattle, on the Eastside. I have neuro sarc, pulmonary sarc and sarc in the eye is under investigation. I am seeing a neurologist on the Eastside and a sarc management specialist at UW medical Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 One of the things you'll find is that Dr. Sharma interacts with alot of the neuros and other specialists at USC-LA in regards to his sarc patients. He may be able to get you into the system there- so that you don't need to go to multiple states for care. I have a rheumi that I see at UC in Sacramento-- ( actually) --Stanley Naguwa, MD. HE too is by referral- but he is the one that orchestrates all my care thru their system. The neuro dept doesn't see too many of us-- I see Dr. Richmond--- and he's close to retiring-- so I've found that he's not all that interested. He did however, order the tests that showed the nerve involvement, the neuropsych involvelment-- and proved that this wasn't any of the "other" autoimmune diseases. So at least we're at that place. I did have to get in his face about the fact that I have PNS-- Peripheral Neurvous System even tho I don't have CNS (Central Nervous System) sarcoidosis. Either way, it's neurosarc. They chose to refer to neurosarc when you have CNS involvement, and love to blow it off if there is no plaques on the brain. For me, we know that I have vasculitis-- so my symptoms of short term memory, multi-tasking, etc-- come and go, depending on what is being influenced by the "inflammation of the day." (my term) Take care, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Tuesday, August 11, 2009 4:01:17 PMSubject: Re: Re: Hi , I actually live in California. I just found the closest neuro. ophthalmologist specializing in Sarc. in Seattle.Neuroscience Institute, Dr. Hamilton . They are referral based only so your doctorwill need to fax or give them a call. I have not yet been seen but am desperate to get help with my eyes.May I ask how old you are? I am 40 and just diagnosed. Have you had a steady progression? I have.Thanks Matt, From: nwtransplant551 <amskirkland@ comcast.net>To: Neurosarcoidosis@ yahoogroups. comSent: Tuesday, August 11, 2009 1:02:49 PMSubject: Re: Hi , >> I also Have neurosarcoidosis and noticed you mentioned a place in Seattle where you were receiving treatment, and I was wondering if you were in the Seattle area. I also live in Seattle and if you are if there is anything I can do to help you I would be very happy to help. I was diagnosed with Neuro sarc in 2004. Take Care, Matt in Seattle>I am also in Seattle, on the Eastside. I have neuro sarc, pulmonary sarc and sarc in the eye is under investigation.I am seeing a neurologist on the Eastside and a sarc management specialist at UW medical Center. Quote Link to comment Share on other sites More sharing options...
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