u/Different-Brick-6310

Hi all!! I've posted here a few times recently because I'm very new to my hypogammaglobulinemia journey. I have low igM and a igG3 subclass that's low too.

One of the things I've had for ever is ear infections, and apprently those infections have led to a bone that separates my brain from my skull to... errode and disappear? Or something to that effect.

This was found on a CT scan and apparently it presents as a huge blob. They thought it was mastoiditis at first. The first hospital network I went too said it was too complex for them. I saw the new doctor yesterday and he explained that it could be 1 of 3 things.

1 huge effusion and infection

2 skin cells that have collected and infected

3 one of two of the above, bone loss and now my brain is poking into my ear cavity.

Regardless of what it is, I'm going to have to have surgery on my skull and I'm just terrified. I haven't had any surgery like this ever before and the last surgery I did have was to get my wisdom teeth removed over 10 years ago.

I'm just so scared. Im not on plasma yet because I retained 60% of my antibodies after my vax challenge( prior to vax challenge I was at a 2/23)- but i didn't tell my doctor that I'm a covid cautions person so I've been wearing an N95 correctly and successfully not gotten sick- sick in years so I wonder if that's a factor.

All and all, I'm just terrified. My doctor told me that the Hypogammaglobulinemia alone is a risk factor that we need to take into account.

Anyways. Has anyone else gone through anything like this, and have any kind of advice?

I just don't even know where to turn to or look for something like this :(

Hi friends. First time poster and just seeking any and all advice.

25- 30 has hit me like a train clinically. With just all kinds of things that were brewing but not taken seriously in my 20s.

Some examples are stuff like:

Excess symptoms turned heart symptoms for years- led to need for full blown iron infusions

Undiagnosed rashes for years, scaring, hair loss, thin skin- led to primary immune disorder that i will need to be on human plasma for.

My current thing that I'm just terrified of-

Reoccurring ear infections have apprently led to a bone between my ear and my brain essentially rotting out.

I'm terrified for years to pass on this on and I'm seeking advice from this sub on how to be taken seriously.

So far the most helpful thing had been bringing a guy to my visits and saying that he's my fiance and really encouraged me to seek care- or that xyz is so bad it bothers him.

I've also seen people reccomend lying and saying that they want to start family planning. My only concern with that is that I will NOT go off my birth control but im considering posturing like "i don't want to start trying until I'm more healthy!"

Does anyone reccomend this? Has it worked for you? What HAS worked for you?? Ect.

Let me know your thoughts in advanced! Thanks!!

Not seeking medical advice- just want to hear about others experiences. After a life time of hearing loss I finally got a CT scan and this seems to be the result.

Frankly from my understanding, I'm scared out of my wits. The ENT told me their hospital network couldn't handle something that complex so they refered me to another.

Has anyone else had this and "the surgery"?

When I google this- it just feels so much more scary :(

What has it been like for you/ what to expect?

Thanks so much in advanced

Not seeking medical advice- just want to hear about others experiences. After a life time of hearing loss I finally got a CT scan and this seems to be the result.

Frankly from my understanding, I'm scared out of my wits. The ENT told me their hospital network couldn't handle something that complex so they refered me to another.

Has anyone else had this and "the surgery"?

When I google this- it just feels so much more scary :(

What has it been like for you/ what to expect?

Thanks so much in advanced

Not seeking medical advice- just want to hear about others experiences. After a life time of hearing loss I finally got a CT scan and this seems to be the result.

Frankly from my understanding, I'm scared out of my wits. The ENT told me their hospital network couldn't handle something that complex so they refered me to another.

Has anyone else had this and "the surgery"?

When I google this- it just feels so much more scary :(

What has it been like for you/ what to expect?

Thanks so much in advanced

Hi all. I've had life long hearing loss, but I've never known why. I had to wait to be able to afford to see and ENT - who reccomend a CT scan. I just completed that and I'm just seeking to hear about other people's experiences with this kind of a scan. What did it show for you, what wad your journey like ?

Not seeking medical advice, just seeking other people going through something similar !

Hello!! I'm on the journey of diagnosis right now... I was tested months ago for immune deficiency and low igm has come up persistently. A test of my titers showed minimal protection. I did a vaccine challenge where my immunologist wanted me to hit at least a 70% but I hit 60%. He told me today that basically, something is wrong but it's not functionally wrong and as a doctor he has to practice insurance not medicine. So I wait another 6 months to see if my antibodies from the vax get lower over time.

He said I have hypogammaglobulinemia, and not to bother telling my pcp because they won't know what it is.

My question now is- am I out of this "box" am I still in it ? Hypogammaglobulinemia seems like it is still an immune issue? This still feels scary and like I'm not out of the clear?

Can i still get info and support from IDF ?

just seeking advice, wisdom anything.

Thank you so much in advanced :,( !!!

Hello! I've had 1 hearing aid from costco for about 5 years now and it's nearing the end of its life. It was just reccomended that I get 2 hearing aids.

Im on employer based health care, that doesn't seem to cover hearing aids. And im just wondering how do people buy these if they're not buying them from costco?

Like are there insurance providers that DO cover them, are people taking out loans? Do you just make enough to afford it ?

Just trying to learn as much as I can before I buy 2 !

Thanks !!

Hi friends. Its looking like ive got selective igM deficiency and an igG3 subclass deficiency. I don't meet with my immunologist for another month to talk about treatment ext. Ive joined the Idf and attended a few of the groups to get to know... all of this better.

I'm a little afraid of infusions! I haven't been sick- since the beginning of the pandemic because I just stayed masking, but my baseline isn't great. I feel a little run down, a little nasally, tired seemingly no matter what. But it's always been like that so I've just gotten used to it.

My question is, do the infusions still make you feel better even if you're not sick- sick all the time? I'm honestly fine wearing a mask the rest of my life but I think that thought probably over simplifies it and the infusions do more than just prevent illness on a surface level.

Please tell me about your experiences!!! Thank you so much!!

Hi friends. I'm currently making a planner around the wheel of the year and the full moons.

The sub categories include common rituals for the holiday and full moons as well as tarot spreads for each.

I'm new and want to get more spiritual. Is there anyhting else I should add?

OR does something like this already exist?

I've been on some kind of diagnosis journey the past 4 ish months now. My igM has come back LOW 3 times now. And my igG3 has also come back low. I was tested for antibodies, showed poor results, did a vaccine challenge and failed that too.

From day 1 my allergist/ immunologist told me that the IDF is a great organization to get familiar with- but not "official diagnosis" yet

Office just called me a day before my appointment and told me that the doctor is going on vacation for at least 2 weeks and they don't know when i could get booked with him again and also, I can't book with anyone else in the office at the time...

My question is, could I ask another medical professional to read these results from my my chart? From the little bit I do know, these results seem relatively serious and I just want to be equipped here :/

My only other provider is a PCP, who is not really involved with this testing.

I'm considering trying the "nurse line" with my insurance.

Any insight at all is really appreciated!!!

What multivitamin is everyone taking? Also has anyone tried these liquid multivitamins?

Hello! Im a cvs customer. I had a weird experience last week and I'm seeking... information, input , anything....

I've been on a laughable 5mg of dextro amphetamine for years now. I've always picked up every 30 days, same thing no issue.

This past month when I went to pick up, it was amphetamine salts. I asked the tech if that was the same thing I always got, they said yes, I didn't question it. I double checked my script history, and mychart and confirmed that I've never taken that. I checked Dr Google to determine they're similar but technically different medications.

I went back to the counter to return it, the pharmacist told me it's the same thing, just a different manufacturer. I asked if i could wait until the manufacturer I normally get is in stock then, he tells me I've had different manufacturers before, ultimately I confirm my return and decide to call them back at their designated not busy time.

When I call, I ask the same questions again- then the pharmacist tells me that the amphetamine salts I was being handed were in fact dextro amphetamine in a bottle LABELED amphetamine salts. I was very confused and had her explain it to me a few times- she explained to me that corporate just labels dextro in the system the same way now, so that's just how the bottles are printed.

Over all- is this real ?

Am I just being a dumb customer?

Am I misunderstanding something here lol?

For context > I don't want to switch my meds because I'm doing serious immunology and allergy testing at this time and what I had worked so I don't want to change it!

Hi friends. I love this community and the information I've learned here has helped me through one of the scariest seasons of my life.

Last year I started getting regular chest pains and heart palpitations. It ended up I'm the ER, and with a holter mointor. pacs, pvc, nstach, ext were observed- but nothing worth treatment apprently. My ferritin has been in the 20s for 3 years that I know of- because of this reddit I pushed hard for treatment. Tried supplements, then finally got iron infusions.

The infusions have been life changing, i feel like I can use my brain again, heart palpitations are no longer waking me up from my sleep and they are way less frequent.

However, I am still getting them every few days, which is a major improvement from what it was but I'm worried they'll come back.

Did infusions cure this symptom of deficiency for you, and if so how long did it take?

I'm about 8 weeks out from completing 3 infusions, my ferritin is now 100.

Thanks so much for sharing. I really mean it 💖