1. < Autoimmune Diseases

Hypogammaglobulinemia

Posted by sassykitten93 @sassykitten93, Dec 12, 2018

What is hypogammaglobulinemia? I cant tell you much because I have not found much myself on this topic except that my body has quit making antibodies I think. if any one has insight please add to this

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autumn12575 | @autumn12575 | Mar 4, 2021
In reply to @becsbuddy "@autumn12575 I haven’t heard from you and wondered if you’ve learned anything about what’s going on..." + (show)
@becsbuddy

@autumn12575 I haven’t heard from you and wondered if you’ve learned anything about what’s going on with your health. If you wish, please check in with us. Becky

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Hi, I haven’t heard anything yet. I’m still waiting on one test result that still is not back yet since Feb 19th. It’s getting a bit irritating that my Doc appointment has been changed twice now because of it. I really wish I knew why it’s taking so long.

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1 reply
autumn12575 | @autumn12575 | Mar 4, 2021
In reply to @becsbuddy "Good morning @autumn12575 . You do sound like you’re on a merry-go-round going nowhere! All the..." + (show)
@becsbuddy

Good morning @autumn12575 . You do sound like you’re on a merry-go-round going nowhere! All the different symptoms and odd occurrences but no answers. My sister and I went thru the same things as you. My sister finally went to Univ of Michigan and was diagnosed with an autoimmune disease. She really liked her care at U of M. I, finally, went to U of Colorado and have been happy with my care. You mentioned that you were thinking of U of Michigan. I say, go for it! But, first, do your homework. Write down the issues that bother you the most, how long you’ve had the symptoms, and the doctors you have seen. And go with an open mind. Take a friend or family member with you—to take notes and to be extra ears
Does this sound reasonable? Can you do this and then let me know what happens?

You might want to read this discussion also:
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/

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Hi, I’ve been to U of M before a couple times for myself for some issues. I’ve also been there many times with my dad for the issues he had. I know how they work. I have a lot of things wrote down already which is what brought all these blood tests in the first place. So now I’m just waiting. I don’t even know what my next move would be!

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ldestella | @ldestella | Mar 4, 2021
In reply to @autumn12575 "Hello, Sorry I haven’t replied right away just had other things in life going on. I..." + (show)
@autumn12575

Hello,
Sorry I haven’t replied right away just had other things in life going on. I would be fine with Pm then I would be fine with phone numbers there. It would be nice to pick ur brain as well. I haven’t kept track over the years with antibiotics or anything like that because I didn’t know any of this. When I sit back & think about it I was sick a lot as a kid growing up. I should probably pick my mothers brain a little about how much & often. I’m not sure how Pm works but I did see it here somewhere. It would be great to have instant convo instead of having to wait to get responses to questions or even answer someone’s else’s. I’ll keep an eye out for anything from you. Right now I’m still waiting on one blood test they had me do on Feb 19th. The results still are not back & im very confused on why it’s taking so long. It’s driving me nuts. My doctors appointment has been changed twice now because of. Please let me know what I gotta do to get in touch with you. Thanks

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Morning hun! U could hit me up on fb...my last name is DeStella n we can go from there! Yes, pick ur moms mind on things also xo 😘

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 20, 2021
In reply to @autumn12575 "Hi, I haven’t heard anything yet. I’m still waiting on one test result that still is..." + (show)
@autumn12575

Hi, I haven’t heard anything yet. I’m still waiting on one test result that still is not back yet since Feb 19th. It’s getting a bit irritating that my Doc appointment has been changed twice now because of it. I really wish I knew why it’s taking so long.

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@autumn12575 Just wondering if you’ve ever gotten your test result and been able to see the doctor? Waiting is always the hardest part, isn’t it? Will you let me know what you’ve been able to find out? Becky

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 5, 2021
In reply to @autumn12575 "Hello, Sorry I haven’t replied right away just had other things in life going on. I..." + (show)
@autumn12575

Hello,
Sorry I haven’t replied right away just had other things in life going on. I would be fine with Pm then I would be fine with phone numbers there. It would be nice to pick ur brain as well. I haven’t kept track over the years with antibiotics or anything like that because I didn’t know any of this. When I sit back & think about it I was sick a lot as a kid growing up. I should probably pick my mothers brain a little about how much & often. I’m not sure how Pm works but I did see it here somewhere. It would be great to have instant convo instead of having to wait to get responses to questions or even answer someone’s else’s. I’ll keep an eye out for anything from you. Right now I’m still waiting on one blood test they had me do on Feb 19th. The results still are not back & im very confused on why it’s taking so long. It’s driving me nuts. My doctors appointment has been changed twice now because of. Please let me know what I gotta do to get in touch with you. Thanks

Jump to this post

@autumn12575 I’ve been thinking of you and wondering if you’ve gotten any answers yet? Waiting is just so difficult. Can you maybe share how things are going for you?

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19kcm56 | @19kcm56 | Sep 26, 2022
In reply to @ldestella "Hello- I am so sorry that u r going thru all of this. My lungs are..." + (show)
@ldestella

Hello-
I am so sorry that u r going thru all of this. My lungs are about shot also. Let it be known that Immune deficiencies can more times then not also cause autoimmune deficiencies...i was diagnosed with the auto before the immune def. and if I wouldn't of quit getting on to my docs this never would of been found. I am a RN n refuse to take any crap from them lol grant u, most are pretty nice. Do u have any bone issues? pain, bone loss? CVID can also cause osteoporosis...sigh xo

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Do you have anymore information regarding osteoporosis and hypogammaglobulinemia?
This year I was diagnosed with severe osteoporosis as well as hypogammaglobulinemia.
My first appointment with an immunologist is not until November.
Thank you, karen

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4 replies
ldestella | @ldestella | Sep 26, 2022
In reply to @19kcm56 "Do you have anymore information regarding osteoporosis and hypogammaglobulinemia? This year I was diagnosed with severe..." + (show)
@19kcm56

Do you have anymore information regarding osteoporosis and hypogammaglobulinemia?
This year I was diagnosed with severe osteoporosis as well as hypogammaglobulinemia.
My first appointment with an immunologist is not until November.
Thank you, karen

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Hi Karen-
I hope this finds u well. Can u pls remind me which group or what diseases that u r facing so that I may send appropriate materials.
Lisa

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ldestella | @ldestella | Sep 26, 2022
In reply to @19kcm56 "Do you have anymore information regarding osteoporosis and hypogammaglobulinemia? This year I was diagnosed with severe..." + (show)
@19kcm56

Do you have anymore information regarding osteoporosis and hypogammaglobulinemia?
This year I was diagnosed with severe osteoporosis as well as hypogammaglobulinemia.
My first appointment with an immunologist is not until November.
Thank you, karen

Jump to this post

Osteoporosis: an ignored complication of CVID
Safa Baris et al. Pediatr Allergy Immunol. 2011 Nov.

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1 reply
callalloo | @callalloo | Oct 4, 2022
In reply to @19kcm56 "Do you have anymore information regarding osteoporosis and hypogammaglobulinemia? This year I was diagnosed with severe..." + (show)
@19kcm56

Do you have anymore information regarding osteoporosis and hypogammaglobulinemia?
This year I was diagnosed with severe osteoporosis as well as hypogammaglobulinemia.
My first appointment with an immunologist is not until November.
Thank you, karen

Jump to this post

Karen, I have no experience with this condition or its association, if any, with osteoporosis. But I found this article in the Cleveland Clinic Journal of Medicine that has a lot of information. You can read it online or download the PDF.

One of the best things about such articles, and research studies is that you can also look up the author(s) and start to build a data base of people working in that area. That can be particularly helpful if one is trying to learn more about, or get treatment for, something uncommon. People tend to specialize in areas that interest them a lot and loke to talk about them. I've called specialists whose names I found this way and, in one instance, got referred to an excellent physician in my area. Hope this is some new info.

From the CCJM;
"Evaluating and managing hypogammaglobulinemia"
https://www.ccjm.org/content/73/2/133

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2 replies
19kcm56 | @19kcm56 | Jan 23, 2023
In reply to @ldestella "Osteoporosis: an ignored complication of CVID Safa Baris et al. Pediatr Allergy Immunol. 2011 Nov." + (show)
@ldestella

Osteoporosis: an ignored complication of CVID
Safa Baris et al. Pediatr Allergy Immunol. 2011 Nov.

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Hi Lisa, Thank you for the replies and the article information. Much appreciated. karen

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