I just found out I may have hypogammaglobulinemia
Well I got sick after I got colvin in 2022 I haven't been the same but it all changed in July of 2025 when I fell and cracked my head open and these things started happening to me.
I have been trying to get help for over a year and finally I asked for referral to a hematologist who brushed me off also and said it was just fibromyalgia but he didn't give me a lot of blood test.
Everything came back pretty normal except for the bad Day have hypogamia bulimia/ I'm sure I'm spelling it wrong.
After I got this back I tried asking my primary doctor and the hematologist with this all met I kept getting my primary sedastic he's different to the hematologist and I say can you just tell me what's wrong they said ask the hematologist so I called and left like two messages and it was about over 3 weeks I didn't hear anything so that I asked for a referral to it in mythologist you know my allergy doctor and they nobody answered me at all I just been ignored so I made my own appointment.
I went in and he wants me to get extra blood work I have it in my purse it's on paper I'm doing it today but he could see my leg I was so swollen he made a noise and I may just be going through my whole body is swelling out I'm getting these burning itching invisible rashes on my face the bottoms of my feet I'm clean so I don't know why it's not rosacea.
Before it will come and go and now it's just been staying for like a month the swelling you know I and everybody knows but nobody cares and this is other things I get with my hands are cramping up real bad just don't feel that well I'm so tired.
I never had swollen in my life until after my hat injury and I think my head injury I think wouldn't that it must have woken something up inside of me I don't know because I started being allergic to like bees in my thirties and had my 40s I remember late 40s I started just feeling sick a lot and I didn't really think about it it got bad even before I got cold like I couldn't be out in the sun too long that I just would get sick I thought it was just the fibromyalgia if I even have that you know but I started also being that could be around any chemicals I can be around any smelly plugins you know the Christmas candles anything like that that I used to love.
And so I've had to do everything myself for over a year I got my own CT scan my own MRI you know my own hematologist appointment my own immune doctor appointment so I'm going to go and get those but I'm sorry this is so long there's so much to say but I'm just going to wrap it up but I'm going to try to get those blood tests today and they're like IGG and all this weird stuff cuz somebody just explaining this to me is that anybody else had these symptoms or my experiencing like two different things going on thank you so much for letting me talk it helps cuz nobody else understands
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I will say that in the end you want a hematologist to find nothing. They only deal with forms of blood cancer. Several years ago my PCP sent me to a hematologist. The first one I saw ran more blood work in the first visit than I thought possible. He then did a bone marrow biopsy. Nothing showed up - he simply said he did not know what the problem was. The second hematologist I went to told me "you don't have problems with your blood, you have problems in your blood".
What she meant was my bone marrow was producing good healthy blood. The problems showing up in my blood were caused when my blood moves around my body and picks up trash that my liver and kidneys clean up. Hematologist deal mainly with bone marrow malfunctions that cause some form of blood cancer.
I sincerely hope you find a doctor that will work with you to get to the bottom of your problems.
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4 ReactionsHematologists do deal with blood cancers for sure, but they also deal with other blood related issues. My husband saw one for 2 years due to his PCP being unable to find the cause of his sudden anemia which was found due to unexplained weakness. The hematologist was wonderful and although she never found the exact cause (many years, scans, and he even swallowed a camera to see his small intestines!), she kept an eye on his blood work to adjust the meds as needed and answered so so so many questions. Once his iron stores were under control she let his PCP (who she had been in contact with all through the process) take over the meds that were now established at proper levels. So please don't discount the hematologists ability to help.
I do wish you the very best. I don't have any answers, just want you to use all the avenues available and hope that one of them will finally find what it is.
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