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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I just looked up Hypogammaglobinemia on OMIM.org, at their number 307200. It is a deficiency of HG1, a human growth hormone. It results in short stature, and some other skeletal and facial stuff, but is very slow progressing. It can be either spotted in chromosome 13 or X. If you have it, it would be well worth your time to look it up, maybe even on Wiki or Google in addition to OMIM.
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Thank you for checking, but I am deficient in gamma globulin (IgG) and take replacement IgG via infusion once a week by needle into my fat (scig). I have never tested low for growth hormone, though it hasn't been tested most likely.
I also have hypogammaglobulinemia I was diagnosed at 30 years old with it I am
Currently 52! When I was originally diagnosed they did many many blood tests and a bone marrow biopsy to rule out other conditions that can cause hypogammaglobulinemia as typically this doesn’t manifest as an adult
Unless an underlying health issue is causing it. However, as with everything else it seems though my life I am an anomaly and I do have primary hypogammaglobulinemia and it wasn’t secondary to a worse disease. I did require one year of IVIG therapy to boost my numbers up to a low stable count. they will never be “normal” but the goal is to get the numbers to a low stable count. This will help not get as many infections. I am followed by a hematologist twice yearly to be sure no intervention is needed and if it is they will
Take action. I also was diagnosed with MS six years ago which is problematic from
A treatment standpoint. Most of the MS therapy drugs lower the immune system anyways but my numbers are always too
Low it’s such a balancing act trying to find which MS drug will not tank my
immune system to much as they don’t know if I have the capacity for my immune system to reboot itself back to my low stable numbers. I don’t want to not
Treat my MS but don’t want to negatively impact my immune system and catch an opportunistic infection. So if I had not gotten sick with MS having hypogammaglobulinemia would always be a problem but for me a very manageable problem. IVIG is not a necessary treatment strictly because of a diagnosis of hypogammaglobulinemia unless your numbers are bottoming out and or you are chronically getting infection after infection. Otherwise, having this disorder requires twice yearly blood work and monitoring by a hematologist
WHY did they just do one year of IVIG. I do SCIG which is basically the same except I infuse IgG more often for shorter period of time into my fat and I do it myself rather than going to a hospital setting/ infusion center. I asked about stopping and my doc said no.
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.
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.
@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?
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?
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.
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.
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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