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Haptoglobin RBC major issues

Blood Cancers & Disorders | Last Active: Sep 11, 2023 | Replies (14)

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@jerrysgirl3

@loribmt I had MRIs (results not back yet) with and without contrast and an EEG. Problem with the EEG is that I was responding to their commands (eyes closed to stimulate sleep (!) eyes open) by focusing on memories of my late mom and dad, and my grandson video of him walking) - I was focused on these! There was no REM sleep! I was staring at my memories not running around with them! I know I have left sided issues but I think they were not clear to me in how I should respond. I thought the more quiet my thoughts are, the more clearer brain wave activity they would get! Not the opposite! This is what report said :
Description Electro cerebral activity consists of well modulated 8-9 Hz background activity that attenuates symmetrically with eye opening. Low amplitude faster frequencies are seen frontally. Sleep Drowsiness is characterized by attenuation of the background, intermixed diffuse slowing and slow lateral eye movements. Activation Procedures: Photic stimulation induces no abnormalities. Hyperventilation was not completed. Abnormal Potentials: There are persistent bifrontotemporal 4 to 5 Hz large amplitude waves seen in the recording. Also noted are infrequent left frontotemporal sharp waves. Electrocardiogram: A single EKG rhythm strip performed during the recording reveals no significant arrhythmias. Impression: This is an abnormal awake and drowsy EEG because of the persistent bifrontotemporal slowing indicative of bifrontotemporal cerebral dysfunction. Also noted are infrequent left frontotemporal sharp waves that may be potentially epileptogenic. To further delineate this abnormality, evaluation with 24-hour ambulatory EEG is recommended.
And yes. I am terrified of prior abdominal issues and constipation!! My Gastro doc next appt is in Oct! I got it in August and out myself on the "cancellation list". Thank you so much for understanding my concerns 🙁

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Replies to "@loribmt I had MRIs (results not back yet) with and without contrast and an EEG. Problem..."

Hi @jerrysgirl3. EEGs and their results are way out of my area of experience. I think it will be helpful to talk with them about what you felt you needed to do during the tests. You have have done everything just right. ☺️ But don’t read too much into results you receive. In fact it’s better if you don’t go looking at Dr Google to interpret your results. Some reports can put the heebie geebies in us and we find out they’re actually benign comments.
But I still feel, with all you have going on with your CLL and Lupus, that you would do well to find another hematologist/oncologist who will take your situation seriously. I know I gave you the link to Mayo Clinic. But even if you sought treatment closer to home with a larger teaching hospital that would be valuable. You need a place which will use a collaborative, bringing in different specialists on one team such as an hematologist for you CLL, a rheumatologist for your Lupus, etc.

When will you be having the followup with the doctor who ordered the EEG and the MRI?