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

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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Morning, s/s means signs n symptoms. I believe they’re checking u for multiple myeloma which is a very wicked blood cancer…it runs in my family 😞 yes, get on a immunologist ASAP! They will give u a booster of like pneumonia or tetanus booster to see how ur immune system reacts to it…if good response, u prob don’t have cvid, bad response…most likely

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@sassykitten93, The best thing I have found for my RD is to start with the link to http://www.omim.org/entry/hypogammaglobulinemia Even to tell your doctor about this ink. That group has saved and/or made better many lives. It is, remember, just a place to start. If you have other issues, just replace hypogammaglobulinemia with whatever the other issue is. Then follow wherever that goes. As for hypogammaglobulinemia, that growth hormone deficiency is a tough one, but you can deal with it if you know what the issues are. I have about 90 genes and variants which are marked as "Deprecatory" by some lab or wizard. I started with gene sequencing by Ambrygen.com, AncestryDNA.com, Sequencing.com. Wikipedia also has a lot of great stuff on some of these diseases. Treat your case first by seeing it as a learning experience. Have fun by teasing your enemies.

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@ldestella

Morning, s/s means signs n symptoms. I believe they’re checking u for multiple myeloma which is a very wicked blood cancer…it runs in my family 😞 yes, get on a immunologist ASAP! They will give u a booster of like pneumonia or tetanus booster to see how ur immune system reacts to it…if good response, u prob don’t have cvid, bad response…most likely

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Thank you for the information. I will find me one. The oncologist told me that I did not look like someone who had multiple melanoma & he did not think I did but he needed to check some things to rule it out. I had some blood work but I’m not sure what it means where cancer is concerned. Today I tried to get answers from them cause the doc left me a very vague message & it made no sense. It seems he’s fixated on 1 symptom I’ve had for years where my cheeks & ears get red. I tried to explain to him my blood pressure is not affected when it happens but somehow he came up w/the idea that it shot right up & then I turned white as a sheet. I swear these docs make up their own crap. I never once said that nor gave any impression of it. So he just decided that was an issue I had. Dear lord!! Not the first time a doc TOLD me a symptom I had that was so far from the truth. Makes me mad! Since Thursday I’ve been trying to get the nurse to call me back & answer my damn question but no luck there. Tried today as well & of course nothing. I’m about ready to go to U of M in Ann Arbor Mi. It’s only 2hrs from me.

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@ldestella

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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Thanks that makes a lot more sense. I know the one protein is very high, the gamma is very low, RBC is very low (barely into range), and WBC is about middle maybe little lower. I have had a bunch of bloodwork so they could rule out Lupus, rheumatoid arthritis, & other things. That’s where the hypogammaglobulinemia showed up.

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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 @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?

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Hello @hopeful33250

First thing I did was go to google & start looking at this stuff. I’ve even done that with all the bloodwork I’ve gotten so far. Trying to understand what’s going on. The problems I run into is there is different types of this disease from what I’m reading. Whether generic primary or its secondary to something else. I find a lot of explanations but things that are different so I really have no idea what pertains to me. That’s where I get lost. I know for years I’ve had odd symptoms that I could not get answers too. I haven’t heard anything back from this cancer doc yet. I still have 2 tests yet to do but I’m supposed to be fasting & super calm. Not sure how they expect me to just be calm with so many unanswered questions that I have. I’m going to have to find an immunologist on my own tomorrow.

Sincerely
Autumn

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@autumn12575

Hello @hopeful33250

First thing I did was go to google & start looking at this stuff. I’ve even done that with all the bloodwork I’ve gotten so far. Trying to understand what’s going on. The problems I run into is there is different types of this disease from what I’m reading. Whether generic primary or its secondary to something else. I find a lot of explanations but things that are different so I really have no idea what pertains to me. That’s where I get lost. I know for years I’ve had odd symptoms that I could not get answers too. I haven’t heard anything back from this cancer doc yet. I still have 2 tests yet to do but I’m supposed to be fasting & super calm. Not sure how they expect me to just be calm with so many unanswered questions that I have. I’m going to have to find an immunologist on my own tomorrow.

Sincerely
Autumn

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I'm glad that you are continuing to be tested and working through the process, @autumn12575. If you need these two more tests to be done when you are "fasting and super calm." I suggest that you try some deep breathing techniques several days before the day you have scheduled these tests. Here is a website that can give you suggestions for deep breathing/relaxation techniques. Just practice these exercises several times a day for several days before the tests are scheduled.
https://www.uofmhealth.org/health-library/uz2255
Would you mind sharing the name of the tests you still need to have?

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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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Hey-
Can u maybe give us a past medical history of any pertinent virus or infections in the past or medicines of significant purposes? I know exactly how I got mine, amongst other major illnesses, n it’s from some wicked medicines I took. That would make my gammaglobulemia aka CVID secondary…I was a RN n have a MPH pre-illnesses ie ME/CFS, fibro, 6 sets steel

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@ldestella

Hey-
Can u maybe give us a past medical history of any pertinent virus or infections in the past or medicines of significant purposes? I know exactly how I got mine, amongst other major illnesses, n it’s from some wicked medicines I took. That would make my gammaglobulemia aka CVID secondary…I was a RN n have a MPH pre-illnesses ie ME/CFS, fibro, 6 sets steel

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I know u said that you was an RN in an earlier post. I honestly don’t know what medicine would matter. I wish I could give you these answers I really do. I was completely blind sided when they called to tell me I had a blood disorder that was an autoimmune disease & gave me the name. That is the only thing I’ve been told other than seeing a cancer/hematologist doc who has not told me anything other than he was checking me for the multiple melanoma. I’m not sure I’ve had any one thing specific other than the terrible pneumonia I had twice in one year. Second time hospitalized me badly (which I believe I explained in a different post). I have no idea where any of this has come from. I don’t know what exactly you want me to say. In the last 5 yrs I’ve had a lot of issues with healing. It takes me forever to heal from anything. I slid & scrapped my knee on pavement in the early summer months & that is not completely healed right. If I get cut or burned it takes forever to heal now. When that didn’t happen when I was younger. I’ve had a salt taste in my mouth on & off for over 4 yrs now that’s so bad it burns my lips & still cannot get an explanation for it. I’ve been on steroids a lot for my breathing issues often about 4-6 times in a year. Yet my lung test is normal they say as well as the X-ray. I’ve battled with constant sinus infections about every month to 2 months for the last 4 yrs or longer always being put on antibiotics. My ears hurt with pressure everyday, slight ringing & lymph-nodes are rock hard just under my ears. Had a terrible bout of vertigo & never been the same since. I have terrible balance. I do not sleep good, my eyes have started doing weird things like darting, I have a terrible problem with heat intolerance & cold but the heat is way worse. My cheeks turn red & my ears and I get hot without knowing why (not blood pressure). I sweat from my torso something bad. My head will have sweat just dripping off it. Doesn’t matter if winter or summer. Although summer is worse. (Winter here is very cold) I’ve had constant infections in one side or the other of my bottom back teeth. Bronchitis about 3-4 times a year from about age 16-17 until about age 40. I haven’t had that as much recently. I had a lumbar fusion that never healed right internally with the bone they used off my hip twice that has happened in same spot. Need another surgery but won’t do it. Recent MRI showed white matter that had changed from the year before. I really wish I knew what specific ur looking for. There is a lot more issues I’ve had that I can’t remember off the top of my head right now that’s been on going for years without answers. I know my mother told me when I was little I was sick a lot. I had a lot of high fevers as a child without a cause so they would say it was just viral.

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@autumn12575

I know u said that you was an RN in an earlier post. I honestly don’t know what medicine would matter. I wish I could give you these answers I really do. I was completely blind sided when they called to tell me I had a blood disorder that was an autoimmune disease & gave me the name. That is the only thing I’ve been told other than seeing a cancer/hematologist doc who has not told me anything other than he was checking me for the multiple melanoma. I’m not sure I’ve had any one thing specific other than the terrible pneumonia I had twice in one year. Second time hospitalized me badly (which I believe I explained in a different post). I have no idea where any of this has come from. I don’t know what exactly you want me to say. In the last 5 yrs I’ve had a lot of issues with healing. It takes me forever to heal from anything. I slid & scrapped my knee on pavement in the early summer months & that is not completely healed right. If I get cut or burned it takes forever to heal now. When that didn’t happen when I was younger. I’ve had a salt taste in my mouth on & off for over 4 yrs now that’s so bad it burns my lips & still cannot get an explanation for it. I’ve been on steroids a lot for my breathing issues often about 4-6 times in a year. Yet my lung test is normal they say as well as the X-ray. I’ve battled with constant sinus infections about every month to 2 months for the last 4 yrs or longer always being put on antibiotics. My ears hurt with pressure everyday, slight ringing & lymph-nodes are rock hard just under my ears. Had a terrible bout of vertigo & never been the same since. I have terrible balance. I do not sleep good, my eyes have started doing weird things like darting, I have a terrible problem with heat intolerance & cold but the heat is way worse. My cheeks turn red & my ears and I get hot without knowing why (not blood pressure). I sweat from my torso something bad. My head will have sweat just dripping off it. Doesn’t matter if winter or summer. Although summer is worse. (Winter here is very cold) I’ve had constant infections in one side or the other of my bottom back teeth. Bronchitis about 3-4 times a year from about age 16-17 until about age 40. I haven’t had that as much recently. I had a lumbar fusion that never healed right internally with the bone they used off my hip twice that has happened in same spot. Need another surgery but won’t do it. Recent MRI showed white matter that had changed from the year before. I really wish I knew what specific ur looking for. There is a lot more issues I’ve had that I can’t remember off the top of my head right now that’s been on going for years without answers. I know my mother told me when I was little I was sick a lot. I had a lot of high fevers as a child without a cause so they would say it was just viral.

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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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@autumn12575

Thank you for the information. I will find me one. The oncologist told me that I did not look like someone who had multiple melanoma & he did not think I did but he needed to check some things to rule it out. I had some blood work but I’m not sure what it means where cancer is concerned. Today I tried to get answers from them cause the doc left me a very vague message & it made no sense. It seems he’s fixated on 1 symptom I’ve had for years where my cheeks & ears get red. I tried to explain to him my blood pressure is not affected when it happens but somehow he came up w/the idea that it shot right up & then I turned white as a sheet. I swear these docs make up their own crap. I never once said that nor gave any impression of it. So he just decided that was an issue I had. Dear lord!! Not the first time a doc TOLD me a symptom I had that was so far from the truth. Makes me mad! Since Thursday I’ve been trying to get the nurse to call me back & answer my damn question but no luck there. Tried today as well & of course nothing. I’m about ready to go to U of M in Ann Arbor Mi. It’s only 2hrs from me.

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Hello @autumn12575,

I'm sorry to hear that you are still frustrated and not understanding some of the medical terms that are being mentioned. I see that you are thinking of going to the University of Michigan in Ann Arbor. I go there also and find them very responsive to their patients and they do an excellent job in educating their patients. I hope you are able to get an appointment and get some good information.

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@autumn12575

I know u said that you was an RN in an earlier post. I honestly don’t know what medicine would matter. I wish I could give you these answers I really do. I was completely blind sided when they called to tell me I had a blood disorder that was an autoimmune disease & gave me the name. That is the only thing I’ve been told other than seeing a cancer/hematologist doc who has not told me anything other than he was checking me for the multiple melanoma. I’m not sure I’ve had any one thing specific other than the terrible pneumonia I had twice in one year. Second time hospitalized me badly (which I believe I explained in a different post). I have no idea where any of this has come from. I don’t know what exactly you want me to say. In the last 5 yrs I’ve had a lot of issues with healing. It takes me forever to heal from anything. I slid & scrapped my knee on pavement in the early summer months & that is not completely healed right. If I get cut or burned it takes forever to heal now. When that didn’t happen when I was younger. I’ve had a salt taste in my mouth on & off for over 4 yrs now that’s so bad it burns my lips & still cannot get an explanation for it. I’ve been on steroids a lot for my breathing issues often about 4-6 times in a year. Yet my lung test is normal they say as well as the X-ray. I’ve battled with constant sinus infections about every month to 2 months for the last 4 yrs or longer always being put on antibiotics. My ears hurt with pressure everyday, slight ringing & lymph-nodes are rock hard just under my ears. Had a terrible bout of vertigo & never been the same since. I have terrible balance. I do not sleep good, my eyes have started doing weird things like darting, I have a terrible problem with heat intolerance & cold but the heat is way worse. My cheeks turn red & my ears and I get hot without knowing why (not blood pressure). I sweat from my torso something bad. My head will have sweat just dripping off it. Doesn’t matter if winter or summer. Although summer is worse. (Winter here is very cold) I’ve had constant infections in one side or the other of my bottom back teeth. Bronchitis about 3-4 times a year from about age 16-17 until about age 40. I haven’t had that as much recently. I had a lumbar fusion that never healed right internally with the bone they used off my hip twice that has happened in same spot. Need another surgery but won’t do it. Recent MRI showed white matter that had changed from the year before. I really wish I knew what specific ur looking for. There is a lot more issues I’ve had that I can’t remember off the top of my head right now that’s been on going for years without answers. I know my mother told me when I was little I was sick a lot. I had a lot of high fevers as a child without a cause so they would say it was just viral.

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@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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