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

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@oldkarl

Be sure to go to https://www.omim.org/entry/hypogammaglobulinemia Then follow the different leads to Ensembl (variants), and others. It's a real education.

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Thank you for posting this link. I just learned today that I have to see a special doctor for the hypogamaglobulinemia. Of course I had no idea what this is was or really is for that matter. I’ve been reading through this entire thread & it’s helped me to understand a little. I appreciate all the links like this one so that maybe I can understand more. Right now I’m just a bit concerned & a great deal worried. Thank you very much.

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@autumn12575

Thank you for posting this link. I just learned today that I have to see a special doctor for the hypogamaglobulinemia. Of course I had no idea what this is was or really is for that matter. I’ve been reading through this entire thread & it’s helped me to understand a little. I appreciate all the links like this one so that maybe I can understand more. Right now I’m just a bit concerned & a great deal worried. Thank you very much.

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@autumn12575 Welcome to Mayo Clinic Connect, a place to give and get support.

I see you found this discussion and you have been able to read the past comments.

You were just diagnosed with hypogammaglobulinemia and you are concerned. Members like @goddard @hopeful33250 @johnbishop have discussed this topic and may have additional help for you.

May I ask what next steps are for your treatment? Is seeing a nutritionist common for this illness?

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Hello @autumn12575

I can certainly understand your concern about this rare diagnosis. If you are comfortable sharing a bit more, could you share with us how this diagnosis came about? For example, what symptoms were you having? Did the doctor do a particular blood test to reveal this diagnosis?

Of course, more importantly, how are you feeling?

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@erikas

@autumn12575 Welcome to Mayo Clinic Connect, a place to give and get support.

I see you found this discussion and you have been able to read the past comments.

You were just diagnosed with hypogammaglobulinemia and you are concerned. Members like @goddard @hopeful33250 @johnbishop have discussed this topic and may have additional help for you.

May I ask what next steps are for your treatment? Is seeing a nutritionist common for this illness?

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I am seeing a hematologist Feb 11th. I’m really hoping for answers to all of this. I don’t anything about it other than information I have read & there is a lot of different information so I really don’t know what of it pertains to me and my circumstance. I was very shocked to hear all of it and the more I read the more I get confused about some of it. I’m trying to understand what everything is for infusion stuff I’ve read in this thread & the different types of this disease but honestly it’s very confusing. I don’t even know why I would see a nutritionist. I am thankful I did find this group because it has helped me to see that this stuff is serious. I just wish I had more answers right now. I truly hate the guessing or waiting to get answers.

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@hopeful33250

Hello @autumn12575

I can certainly understand your concern about this rare diagnosis. If you are comfortable sharing a bit more, could you share with us how this diagnosis came about? For example, what symptoms were you having? Did the doctor do a particular blood test to reveal this diagnosis?

Of course, more importantly, how are you feeling?

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Hello,
I am happy to share what I know so far. I feel alright really other than I’m tired a lot. I’ve had these strange symptoms on & off over the last few years that each specialist can’t really tell me the cause for but I’ve just kind of kept looking for answers myself. What brought on expanding testing was actually me pushing my neurologist that I see for my problems w/neck & back after surgeries I’ve had to both area (auto accident 2011). She ordered an MRI of my brain cause of numbness I was getting in my face/ear that would come & go. It showed I had white matter so I started researching the possible causes of it after I seen the results of the MRI. I noticed I had a lot of similar symptoms as someone with MS.
She called me to tell me the results and said that it was probably not MS and that it was from migraines however I have headaches I don’t actually have full on migraines and it bothered me for the doctor to say “probably not”. I talk to her a little more about it and told her I wanted further testing done to rule out whether it was MS or not. So she tested me for lupus & all kinds of stuff & that is what has led me to here. One of the tests I had came back with this diagnoses. I have no idea what else is gonna come next but I will find out more tomorrow when I see a hematologist.

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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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@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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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

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@autumn12575

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

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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
Lisa

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@ldestella

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
Lisa

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I have been diagnosed with CVID also, after they diagnosed me with MAC. MAC often occurs in people with compromised immune system, so they check your immunity as part of MAC workup– turns out I had low gamma globulins so they they looked at my vaccine reactions. Now, I do scig (gamma globulin from pooled plasma, that I infuse myself with) every week– which brings my gamma globulin levels ups to the middle of normal reference range, I highly recommend SCIG instead of IVIG because you do it more often and put a lot less in your body at one time so there fewer side effects. I was very worried I would not react to the Covid moderna vaccine–but I had my titer tested and I did. I made a ton of IgG antibodies to the Moderna vax. Yay.

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@ldestella

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
Lisa

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Hi Lisa, thanks for the response. It’s really helpful to hear how this disease impacts ur life. I don’t know what s/s means exactly? If you could explain a little that’d be great. Your welcome to pick my brain. I’m so happy I found this group considering I’ve gotten more answer here verses any doctors yet. I don’t even really understand why I needed to be checked for multiple melanoma to be honest. I wonder if this is a generic disorder & if I need to have my kids checked too. I had a terrible bout of pneumonia about 5 yrs ago when I went to see my mother in another state. It landed me in the hospital there for 6days on oxygen. I currently have asthma & have since age 13. I struggle with breathing problems already so getting that shot would not be on top of my list. I’ve had the tetanus shot & never had a reaction in the past that I can remember. I suppose I need to find me an immunologist.
Autumn

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@goddard

I have been diagnosed with CVID also, after they diagnosed me with MAC. MAC often occurs in people with compromised immune system, so they check your immunity as part of MAC workup– turns out I had low gamma globulins so they they looked at my vaccine reactions. Now, I do scig (gamma globulin from pooled plasma, that I infuse myself with) every week– which brings my gamma globulin levels ups to the middle of normal reference range, I highly recommend SCIG instead of IVIG because you do it more often and put a lot less in your body at one time so there fewer side effects. I was very worried I would not react to the Covid moderna vaccine–but I had my titer tested and I did. I made a ton of IgG antibodies to the Moderna vax. Yay.

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My gamma globulin is very low. I still don’t quite understand what all the blood work means. My proteins are very high and other things very low. I don’t know what all matters in the blood work to define this. I can tell you currently I don’t feel that bad. I get a lot of sinus infection as well as lung related issues, bruise super easy & take forever to even heal. Seems if something starts bleeding it takes forever to get it to stop, I’m tired a lot but I also don’t sleep well either, & I’ve noticed different little things that have either started happening or gotten worse. I really wish I knew what it all meant. I could see doing treatments at home though. Sounds like it would be a lot easier overall. I’m not afraid of anything medical really. Before my Auto accident I was going to college to be a medical assistant. Makes it easier to loo at certain things.
Sincerely, Autumn

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@autumn12575

My gamma globulin is very low. I still don’t quite understand what all the blood work means. My proteins are very high and other things very low. I don’t know what all matters in the blood work to define this. I can tell you currently I don’t feel that bad. I get a lot of sinus infection as well as lung related issues, bruise super easy & take forever to even heal. Seems if something starts bleeding it takes forever to get it to stop, I’m tired a lot but I also don’t sleep well either, & I’ve noticed different little things that have either started happening or gotten worse. I really wish I knew what it all meant. I could see doing treatments at home though. Sounds like it would be a lot easier overall. I’m not afraid of anything medical really. Before my Auto accident I was going to college to be a medical assistant. Makes it easier to loo at certain things.
Sincerely, Autumn

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Morning,
The white blood cells r ur immune system n the big generals, we can call them, r ur IgG, IgM, IgA. These “generals” tell all the monocytes, lymphocytes etc what to do…when these generals r not working properly, infection is eminent. IgG is the most prevalent general (protein) in ur body, IgA is in ur respiratory tract n lining of ur lungs as is IgM. When these don’t work properly, u have to have the IgG either IV or in ur belly (sub q). I have a port in my chest now which makes life much easier!

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