trintiybella Posted January 19, 2014 Report Share Posted January 19, 2014 All the tests came back fine on my child and Dr. N. wants us to see psychiatrists in his group. I would really like to have a follow up visit with Dr. N. anyway to discuss some things. For one...I am a bit confused that at our initial visit he said it's probably brain inflammation, and now he does not mention that. Is he able to tell that there is no brain inflammation with the spect scan??? He did a lot of blood work too. Perhaps he can tell from that???? Regardless...he is sending us on our way. Wish he would do a spinal tap. Any comments are welcome. Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted January 19, 2014 Report Share Posted January 19, 2014 trinitiybella -- have you gotten a copy of your NYU bloodwork? Link to comment Share on other sites More sharing options...
T_Anna Posted January 19, 2014 Report Share Posted January 19, 2014 I would get copies of all the test results. Spect scans, etc, too. With DS they said all the blood work was normal and when we went over the results we saw an inflammation marker that was elevated. We pursued that and found Hashimoto's Encephalopathy. T.anna Link to comment Share on other sites More sharing options...
trintiybella Posted January 19, 2014 Author Report Share Posted January 19, 2014 They are sending me copies. Very frustrating. Link to comment Share on other sites More sharing options...
JoyBop Posted January 19, 2014 Report Share Posted January 19, 2014 So they have a patient portal? Most hospitals do now to comply with new federal laws. Its great bc once you have an account you have access to all of your test results. You also see diagnosis codes and bills but not actual doctors notes or progress notes. Link to comment Share on other sites More sharing options...
JoyBop Posted January 19, 2014 Report Share Posted January 19, 2014 Here it is https://mychart.nyulmc.org/mychart/ Make an account and as soon as your test results have been reviewed they will be posted for you to see and print. Link to comment Share on other sites More sharing options...
trintiybella Posted January 19, 2014 Author Report Share Posted January 19, 2014 Great, thanks! Link to comment Share on other sites More sharing options...
ktdommer Posted January 20, 2014 Report Share Posted January 20, 2014 trin- are you with an ILADS doctor? Link to comment Share on other sites More sharing options...
trintiybella Posted January 20, 2014 Author Report Share Posted January 20, 2014 Yes, Dr. J. in Conneticut.. Link to comment Share on other sites More sharing options...
Guest Posted January 21, 2014 Report Share Posted January 21, 2014 What they told me including Dr. N was that they had a set of guidelines they go by to reach the diagnosis of clinical encephalitis. This did include bloodwork and it included my PET scan or in your case a spect scan. They are looking at the pro-inflammatory cytokines and T cells and many other things. You can look up "ocd neuroinflammation and psychiatric illness" and find his research and he lists some of the things they are looking for. But he said they are looking for: - symptoms - failed response to psychiatric medication - bloodwork - (and lastly) pet scan or if need be, spect scan I think for their office, you have to meet all criteria to be diagnosed. After the results of my PET scan my mom did extensive research (severe and extensive areas through-out the brain with decreased metabolism) - she found that the only cause of this is inflammation.........now they are trying to figure out, what is causing inflammation and through labs have concluded autoimmunity but now what is causing autoimmunity.......... So I assume that is how they would approach the spect scan as well. I don't know much else to say b/c I've only had the one appt. and I was extremely fatigued. I don't see how a follow up would hurt if you did want clarification. Or you could write a message through the portal asking for clarification, I too have used the portal. Link to comment Share on other sites More sharing options...
JAG10 Posted January 23, 2014 Report Share Posted January 23, 2014 My dd14 had a spect scan in 2007 at Amen clinic in VA. My understanding at the time was it shows activity and her whole brain was over active at that time. Link to comment Share on other sites More sharing options...
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