← Return to Hypogammaglobulinemia



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

Comment receiving replies

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

Jump to this post

Replies to "Hello @hopeful33250 I’d like to thank you for asking details. Kind of keeps me discussing all..."

Hello- I have this...it’s also known as CVID or common variable immune deficiency with predominant B cell damage. I had to advocate for myself also until an infection hospitalized me! U need to see a IMMUNOLOGIST/allergy doc!!! They will, to ck ur immunity, give u either a pneumonia shot or even tetanus shot (very little) to see how ur immune system reacts. Mine barely did so I was put on human gamma globulins every four weeks...this is a lifetime process. In 4 yrs I have been on 103 antibiotics, as they r the tx for this dz! Now, I know how I got mine n would love to pick ur brain on s/s that u have if ok. I am disabled now but am a RN n have a MPH

Hello @autumn12575

I am sorry that your appointment did not give you the answers that you were seeking. That is disappointing. Have you "googled" the term "hypogamaglobulinemia"? If not, please try to do that. There are a lot of websites with information about it. They may offer you some insights, although they may be difficult to read because of their technical nature.

Keep trying to research and understand what is going on. If you don't understand something a doctor is telling you, follow up with a message through the patient portal and ask more questions or ask to talk with the doctor's nurse or PA (physician's assistant). Often these medical professionals have more skills in explaining and educating patients than doctors.

I hope to hear from you again. Will you keep posting and providing updates as you search for answers?