I just found out I may have hypogammaglobulinemia

Posted by Melissa @milojax75, Sep 29 8:30am

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

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

Melissa, it's terrible that you are suffering and having to pay your own tests. I don't know much of anything about autoimmune systems, but the leg swelling and the hand pain make me think of lupus.
I remember reading about some connection between lupus and bee stings. Wishing you the best luck.

Does anyone on site recognize any of these symptoms?

REPLY

Good afternoon,
I was reading most of your message and something popped out. When the symptoms started Had you started any new medication’s less than two months before?. The reason why I say two months is because I had a bad reaction to a medication at six weeks and my left leg swelled up majorly. The doctors at the Mail clinic ER did all the testing and could not figure out what it was. It was many weeks before I got in with my primary and immediately he knew what was the matter. The medication I was taking was kind of a controlled drug so they cut my meds in half every so many days until I was not taken any.
Do a little homework the drug I was taking I know it started with the letter G But I cannot remember the name.
Read up on all your medication’s the side effects and the rare side effects.
I do wish you the very best because I have been there and it was caused by a drug.

REPLY
Profile picture for gently @gently

Melissa, it's terrible that you are suffering and having to pay your own tests. I don't know much of anything about autoimmune systems, but the leg swelling and the hand pain make me think of lupus.
I remember reading about some connection between lupus and bee stings. Wishing you the best luck.

Does anyone on site recognize any of these symptoms?

Jump to this post

@gently thank you I actually did not have to pay for my test I just had to get them on my own because my doctor just has been annoying me for a year you know someone and not taking me seriously and I've never been a hypochondriac or anything so don't really understand why thank you for your kind words.
I was tested for autoimmune twice and it came back negative I know it makes me think of Lupus too but I don't know I don't think that that's what it is I think I had this autoimmune you know I don't know what exactly before I crack my head open I think it just I was living with it and when I cracked my head open I think it caused the systematic singer something in my body you know six days later was my first symptom and that's when I started messaging my doctor that I was so sick thank you

REPLY
Profile picture for minnesota10 @minnesota10

Good afternoon,
I was reading most of your message and something popped out. When the symptoms started Had you started any new medication’s less than two months before?. The reason why I say two months is because I had a bad reaction to a medication at six weeks and my left leg swelled up majorly. The doctors at the Mail clinic ER did all the testing and could not figure out what it was. It was many weeks before I got in with my primary and immediately he knew what was the matter. The medication I was taking was kind of a controlled drug so they cut my meds in half every so many days until I was not taken any.
Do a little homework the drug I was taking I know it started with the letter G But I cannot remember the name.
Read up on all your medication’s the side effects and the rare side effects.
I do wish you the very best because I have been there and it was caused by a drug.

Jump to this post

@minnesota10
Well who knows I probably did I don't really know but you know I know in my heart and I know that they tried to blame everything on you know because I had been taking in one year I took five days worth of that you know what that stuff did they give you for to get I don't know what they give it for you before but it starts with a p and it's not hard drugs or anything I am on painkillers I don't take him anymore because they make my symptoms worse but you know I mean who knows that I mean I don't know it's just weird you know it can't really blame it on that because you know anything I started was probably way before 2 months that I when I cracked my head open it might have even been after and you know the fact is is that I still just didn't never had this many horrible horrible symptoms you know until 6 days after I cracked my head open so bad and that was the first time I messaged my doctor and if you can't read my words right there with me I'm using my speaker I'm sorry I can't type with my fingers much anymore anyway I agree with you you know it probably has something to do with it because my system you know I'll screw it up and stuff you know and it's making you know I'm on something starting with b and I know what you're on but anyway you know I'm not trying to laugh about it but hey if you don't laugh you cry right I want to tell you all I have a YouTube channel I suppose that so I can get more subscribers since my brain injury I totally turn into a different personality like I'm not afraid of anything in my voice is changed I mean for the better I sound like somebody from a home or maybe that I really like 5 years ago and I'm not kidding the worst part is that I lost myself and my survival mechanism that my momma gave me all my life and this is I've been through a lot a lot of bad things in my life but this is the worst anyway yeah I see where you're coming from but you know I'm saying that could be a part of why after I hit my head that you know the stuff is happening but I still say the fact remains that I cracked the back of my head open and it was horrible it was a bad one trauma and I didn't go in and let my doctor know but I didn't go in and my symptoms start is 6 days later it started with feeling very very ill and so I contacted him and I don't like doctors so it takes a lot for me to even tell my doctor anything you know and after that you know I started having horrible pains down my forearms and fingers it happened maybe four or five times clears that it was just horrible horrible pain and I have a high pain threshold you know and then they just started feeling tingly numb for months until I really lost feeling and I'm now you know and along with that I my leg started swelling for the first time just on one side from the knee down and you know and then those rash rashes that aren't actually there started you know and this stuff is so hard to understand and I've been trying trying you know when his his nurse has told me the day before Thanksgiving to quit messaging him it wasn't like I was messaging him everyday or anything you know and I said I'm sorry my short-term memories is getting so bad I want him to know what's going on as I only see him once a year and not once did anybody I asked for a neurology but nobody would give me a referral and I've been researching until I couldn't do it anymore a few months ago but you know I'm making timelines and printouts at the library of everything of my church cuz I must have sent over 200 messages I read them one day like a few months ago it made me cry you know I was like begging for help I was I'm wasting away the last a lot of weight too and I've been ignored and that you know that's not right I hope you I'm sorry I taught ever since I hit my head I like talk too much too lol

REPLY
Profile picture for minnesota10 @minnesota10

Good afternoon,
I was reading most of your message and something popped out. When the symptoms started Had you started any new medication’s less than two months before?. The reason why I say two months is because I had a bad reaction to a medication at six weeks and my left leg swelled up majorly. The doctors at the Mail clinic ER did all the testing and could not figure out what it was. It was many weeks before I got in with my primary and immediately he knew what was the matter. The medication I was taking was kind of a controlled drug so they cut my meds in half every so many days until I was not taken any.
Do a little homework the drug I was taking I know it started with the letter G But I cannot remember the name.
Read up on all your medication’s the side effects and the rare side effects.
I do wish you the very best because I have been there and it was caused by a drug.

Jump to this post

@minnesota10
I'm sorry what I meant was my chart stupid speakerphone cuz my words all messed up and I'm sorry I'm sorry for like joking I shouldn't be but I tend to do that lately I don't know what thanks my chart is like where I copying I've been one thing I got good at copying and pasting

REPLY

@gently can you tell me more what that is they're not going to do anything nobody's done anything for me and over a year

REPLY

@milojax75 Welcome to Mayo Clinic Connect! Melissa, did you see a doctor or go to an emergency room right after you fell and cut your head open? Did anyone provide help when you fell? I’m asking these questions because you sound very confused and we’d like to help you.

REPLY
Profile picture for Melissa @milojax75

@gently can you tell me more what that is they're not going to do anything nobody's done anything for me and over a year

Jump to this post

@milojax75,
I usually have to arrange follow up with my doctors, too. But you have those labs to complete, and they may well reveal something. Autoimmune diseases are tricky as symptoms often cross over. There is scientific debate over whether fibromyalgia is an autoimmune system. About a fourth of patients with lupus are determined to also have fibromyalgia.
I don't have lupus and don't have a medical background. But I was struck by your phrasing the the head injury had "woken something up inside of me." I remembered the article I linked. When I read the article I was surprised; I wouldn't think it would happen in that way.
So really all I know about the possible autoimmune connection to head injury is from the article and then your experience. And I suspect the connection is largely unknown even in the medical community. At this point, though, the important thing might not be the origin of the symptoms, but help with resolution of them.
Your post reads as stream of consciousness. I found it easy to follow and funny in parts. Your speaker can't register your internal laughter. It could sound really mixed up, but it isn't.
Maybe that survival mechanism your mama gave you is intact in your fearless voice and your sense of humor.

REPLY
Profile picture for Becky, Volunteer Mentor @becsbuddy

@milojax75 Welcome to Mayo Clinic Connect! Melissa, did you see a doctor or go to an emergency room right after you fell and cut your head open? Did anyone provide help when you fell? I’m asking these questions because you sound very confused and we’d like to help you.

Jump to this post

@becsbuddy I was about to ask @milojax75 the same question as I fell about three weeks ago and split open not only my scalp but also the membrane covering my skull, and I had to be transported to emergency in an ambulance. I was given an IV antibiotic drip and a tetanus shot. Got three stitches to the membrane to cover my skull and five stitches to my scalp. I was sent home with a strong antibiotic - 500mg. pills - to be taken four times a day for a week.

@milojax75 did you have to go to the hospital or a clinic to get stitches?

In Canada we have to get a referral to see any specialist or to get any kind of testing.

REPLY
Profile picture for rashida @rashida

@becsbuddy I was about to ask @milojax75 the same question as I fell about three weeks ago and split open not only my scalp but also the membrane covering my skull, and I had to be transported to emergency in an ambulance. I was given an IV antibiotic drip and a tetanus shot. Got three stitches to the membrane to cover my skull and five stitches to my scalp. I was sent home with a strong antibiotic - 500mg. pills - to be taken four times a day for a week.

@milojax75 did you have to go to the hospital or a clinic to get stitches?

In Canada we have to get a referral to see any specialist or to get any kind of testing.

Jump to this post

@rashida I also had a fall at home. It knocked me out, gave me a bad cut in my scalp, and broke a vertebrae in my neck. Thank heavens I went to the ER!

REPLY
Please sign in or register to post a reply.