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I see neurologist tomorrow.... UPDATE
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<blockquote data-quote="timer lady" data-source="post: 101174" data-attributes="member: 393"><p>My neurologist appointment lasted almost 1.5 hours. He once again went over my entire hx; over the last month he had been doing research & asking for & receiving add'l records of mine from the past couple of years for comparison. He consulted with a neurologist from Mayo Clinic as well.</p><p></p><p>Saying all that, neuro doctor is convinced I have Susac's Syndrome. He & the consult at Mayo feel this is the track to follow - it fits. </p><p></p><p>There is still vasculitis to treat.</p><p></p><p>Game plan: brain biopsy & cerebral angiogram are both off the table for the time being. Updated MRI (scheduled for Wednesday), see my opthamologist (sp?) for something specific requested by neuro doctor. Go back to my audiologist for an updated hearing examination. Updated labs (tomorrow).</p><p></p><p>See neuro doctor first week of January. He, in the meantime, is working with the neuro doctor at Mayo Clinic to get me in ASAP. As this is a somewhat uncommon syndrome it may get me in quicker than normal. </p><p></p><p>The prednisone treatment will continue (at high dosages - sigh). The question as to further tweaking my immune system is up in the air until I get to Mayo Clinic, though neuoro doctor may consider IVIG (intravenous immunoglobulin) treatments if necessary before being seen at Mayo. </p><p></p><p>It sounds like neuro doctor found a consultant Mayo neuro doctor to check in with until I can be seen.</p><p></p><p>Neuro doctor is convinced this has been an ongoing issue for at least 1.5 years though everyone called it stress until I ended up at the hospital in July & then again in August in physical crisis. </p><p></p><p>I don't necessarily like what I'm being told though it could be a lot worse. There is a treatment path of sorts to follow though this is one of those rare syndromes that have little to go on. </p><p></p><p>I appreciate your prayers, body twisting & such - I thought of you all as I sat in neuro doctor's office while he & his secretary were setting up appts here & there for me. </p><p></p><p>It was somewhat amusing (as my memory has been affected & I have a good deal of confusion every now & then) hearing neuro doctor tell his secretary to write down everything for me & then to give me an add'l copy to keep on hand. Neuro doctor handed me the envelope of information & asked me to give a copy of it to husband for safe keeping. If you saw my husband's office you would be ROFL. :rofl: </p><p></p><p>My heart is a bit lighter this morning - I'd like to say there is a spring to my step but get real, I'm using a walker! :smile:</p></blockquote><p></p>
[QUOTE="timer lady, post: 101174, member: 393"] My neurologist appointment lasted almost 1.5 hours. He once again went over my entire hx; over the last month he had been doing research & asking for & receiving add'l records of mine from the past couple of years for comparison. He consulted with a neurologist from Mayo Clinic as well. Saying all that, neuro doctor is convinced I have Susac's Syndrome. He & the consult at Mayo feel this is the track to follow - it fits. There is still vasculitis to treat. Game plan: brain biopsy & cerebral angiogram are both off the table for the time being. Updated MRI (scheduled for Wednesday), see my opthamologist (sp?) for something specific requested by neuro doctor. Go back to my audiologist for an updated hearing examination. Updated labs (tomorrow). See neuro doctor first week of January. He, in the meantime, is working with the neuro doctor at Mayo Clinic to get me in ASAP. As this is a somewhat uncommon syndrome it may get me in quicker than normal. The prednisone treatment will continue (at high dosages - sigh). The question as to further tweaking my immune system is up in the air until I get to Mayo Clinic, though neuoro doctor may consider IVIG (intravenous immunoglobulin) treatments if necessary before being seen at Mayo. It sounds like neuro doctor found a consultant Mayo neuro doctor to check in with until I can be seen. Neuro doctor is convinced this has been an ongoing issue for at least 1.5 years though everyone called it stress until I ended up at the hospital in July & then again in August in physical crisis. I don't necessarily like what I'm being told though it could be a lot worse. There is a treatment path of sorts to follow though this is one of those rare syndromes that have little to go on. I appreciate your prayers, body twisting & such - I thought of you all as I sat in neuro doctor's office while he & his secretary were setting up appts here & there for me. It was somewhat amusing (as my memory has been affected & I have a good deal of confusion every now & then) hearing neuro doctor tell his secretary to write down everything for me & then to give me an add'l copy to keep on hand. Neuro doctor handed me the envelope of information & asked me to give a copy of it to husband for safe keeping. If you saw my husband's office you would be ROFL. [img]:rofl:[/img] My heart is a bit lighter this morning - I'd like to say there is a spring to my step but get real, I'm using a walker! [img]:smile:[/img] [/QUOTE]
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I see neurologist tomorrow.... UPDATE
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