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Hypogammaglobulinemia

Autoimmune Diseases | Last Active: Apr 2 2:16pm | Replies (77)

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@hopeful33250

Hello @autumn12575

Thanks for a little more information regarding your journey to find an answer to your health problems. I congratulate you on advocating for yourself and persisting until you found a diagnosis. I'm glad to hear that Mayo Connect has been helpful to you.

As you had your appointment with a hematologist yesterday, I look forward to hearing what new information you might have. Will you post again with an update?

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Replies to "Hello @autumn12575 Thanks for a little more information regarding your journey to find an answer to..."

Hello @hopeful33250
I’d like to thank you for asking details. Kind of keeps me discussing all of this with someone. I honestly can say I am just as confused now as I was before that doc appointment. The hematologist was also oncology doc which I was told I was not seeing him for cancer. However; I was lied to about that. I guess I was sent there to see if I have multiple melanoma. He took the autoimmune part & acted as if that was no big deal. Even told me he sees it all the time which I found strange considering the info I’ve read about it. I was hoping for answers but really got nowhere. He told me that I did not look like someone who had multiple melanoma & he was pretty sure I didn’t but I was sent there by my neurologist for him to evaluate that & to see if I did. I was so upset to find out they lied to me about why I was seeing him. Well anyways he wanted me to do more bloodwork said I could right then. I went to do it and they only would do a couple of the 4 he ordered. 2 require me to fast & be completely stress free. (Yea right) that’s not gonna happen. I would really appreciate it if anyone could tell me what kind of doctor I need to see for the hypogamaglobulinemia & if someone could explain more to me what it actually is specifically. I think I understand that it can be primary or secondary & there is different types?? But I super confused on what I should do next. I saw my primary doctor as well that day. He flat out told me that he doesn’t know anything about this stuff at all. He also added that an autoimmune disease definitely explains a lot for how much I was getting sick constantly with certain types of infections. I’m scared right now because I have no idea what to expect or where to go. I haven’t told any of my family members about any of this expect my husband & my brother. I don’t know what to say to any of them. I don’t have the answers to their questions right now & I do not want my adult kids to start freaking out without them having the knowledge of what everything is. So I greatly appreciate any information. Thank you to everyone.

Sincerely grateful