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← Return to Haptoglobin RBC major issues
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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?
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@loribmt we have a massive issue with hospitals out here where I live. The local one everyone knows will kill you, they're affiliated now with a university hospital which I think has gone down hill since hooking up with our local one. My hematologist is 100 miles away in NYC and I asked in 2015 about an endo at the same hospital (at that time) so all docs would be under the same roof. He wouldn't do it. The other hospital is also 100 miles away but you can only drive there (where current doc is is accessible by bus but it's a 13 hr round trip which I can't do anymore) No other way. Actually my PA mentioned the other day that it's time to get the CLL and lupus docs on the same page. I can tell you with 100% certainty that it's never going to happen. I have to call tomorrow to make Neuro appt. Probably not til November even tho results are serious. I'm just disgusted.
And now, today. So I suddenly have milk wheat soy and egg food allergies since lupus diagnosis. Hubby baked some lemon cookies for himself, using wheat flour. I was upstairs resting. I came downstairs and was by the sink where he prepared and baked, and came down with my bad hives rash 😳. Contact allergy now too. Imagine if just by breathing I could inhale the flour in the air? I can't even eat food that doesn't have those ingredients in it but was processed in a factory that also processes those ingredients!! I get the same reaction - bad hives but not as extreme as if I actually ate those ingredients! Poor husband😢😵💫 I've changed his world as well......