Hypoglobulimia
Just wondering how many others have this, mine was med induced.
I'm the opposite, hyper(gamma)globulinemia... I often read about people with hypo in the immune dysfunction groupes I'm a part of, barely ever about hyper. Yet it still means immune dysfunction in the end, so I wanted to say hi! ♡
are you on it for the rest of your life, now?
I am curious because my immunologist has mentioned at least 1 year or longer for me. I flat out asked if this was a lifetime deal. Somehow he skirts a direct answer. I suppose it's different for everyone!Hi! I'm not sure what you mean? "On" what?
And sorry I hadn't seen your previous question! I'll reply now. 🙂
Mine developed after 1.5 years of an MS disease modifying medication called Ocrevus. One infusion every 6 months. Over time my immunoglobulin markers dropped really low. My MS is still around and now I have this.
Can I ask what some of your symptoms were, how long you've been dxd with it and what they are doing to help you?
Thanks for your reply!As I said, I was born with it as far as we know. I've always had a poor immune system, catching everything under the sun and would be harder and last longer. But I'm lucky, it's not as serious as others who end up in the hospital for a cold... mostly like a cold would hit me like the flu, and would usually end up in bronchitis, for example.
I have multiple other health issues, and that wasn't looked at until a surgery where my bloodwork was really bad. The doctor was sure I had either a very serious infection or blood cancer. I had neither... but after years of me asking for investigations, I finally saw an immunologist. The tests showed I was at risk of secondary amyloidosis (the protein was elevated), so they finally found the cause of my inflammatory pain and issues (a systemic autoinflammatory disease... we still don't know which one)... and probably caused by my immune dysfunction, which was discovered at about the same time.
I had had a test done which found the hypergammaglobulinemia around 2015, but the doctor didn't do anything about it and I only found out later. We had tested because of my unexplained small fiber neuropathy.
As for what they're doing... for the hypergammaglobulinemia : nothing. For the autoinflammatory condition I now take Colchicine, and it's helped a lot.
Keep learning about your conditions, it's so important if one wants to advocate for themselves! Hang in there!iam on IVIG infusion therapy every 30 days. Looks like it could be forever.
I am just trying to wrap my head around all of this.
I need to be careful doing to much Dr google. My brain goes down a rabbit hole and my doctors hate when I do it. Lol
I have this. I’m not sure how I developed it.
