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Hypogammaglobulinemia

Autoimmune Diseases | Last Active: Jul 22 7:40am | Replies (79)

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@autumn12575

I know u said that you was an RN in an earlier post. I honestly don’t know what medicine would matter. I wish I could give you these answers I really do. I was completely blind sided when they called to tell me I had a blood disorder that was an autoimmune disease & gave me the name. That is the only thing I’ve been told other than seeing a cancer/hematologist doc who has not told me anything other than he was checking me for the multiple melanoma. I’m not sure I’ve had any one thing specific other than the terrible pneumonia I had twice in one year. Second time hospitalized me badly (which I believe I explained in a different post). I have no idea where any of this has come from. I don’t know what exactly you want me to say. In the last 5 yrs I’ve had a lot of issues with healing. It takes me forever to heal from anything. I slid & scrapped my knee on pavement in the early summer months & that is not completely healed right. If I get cut or burned it takes forever to heal now. When that didn’t happen when I was younger. I’ve had a salt taste in my mouth on & off for over 4 yrs now that’s so bad it burns my lips & still cannot get an explanation for it. I’ve been on steroids a lot for my breathing issues often about 4-6 times in a year. Yet my lung test is normal they say as well as the X-ray. I’ve battled with constant sinus infections about every month to 2 months for the last 4 yrs or longer always being put on antibiotics. My ears hurt with pressure everyday, slight ringing & lymph-nodes are rock hard just under my ears. Had a terrible bout of vertigo & never been the same since. I have terrible balance. I do not sleep good, my eyes have started doing weird things like darting, I have a terrible problem with heat intolerance & cold but the heat is way worse. My cheeks turn red & my ears and I get hot without knowing why (not blood pressure). I sweat from my torso something bad. My head will have sweat just dripping off it. Doesn’t matter if winter or summer. Although summer is worse. (Winter here is very cold) I’ve had constant infections in one side or the other of my bottom back teeth. Bronchitis about 3-4 times a year from about age 16-17 until about age 40. I haven’t had that as much recently. I had a lumbar fusion that never healed right internally with the bone they used off my hip twice that has happened in same spot. Need another surgery but won’t do it. Recent MRI showed white matter that had changed from the year before. I really wish I knew what specific ur looking for. There is a lot more issues I’ve had that I can’t remember off the top of my head right now that’s been on going for years without answers. I know my mother told me when I was little I was sick a lot. I had a lot of high fevers as a child without a cause so they would say it was just viral.

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Replies to "I know u said that you was an RN in an earlier post. I honestly don’t..."

Good morning @autumn12575 . You do sound like you’re on a merry-go-round going nowhere! All the different symptoms and odd occurrences but no answers. My sister and I went thru the same things as you. My sister finally went to Univ of Michigan and was diagnosed with an autoimmune disease. She really liked her care at U of M. I, finally, went to U of Colorado and have been happy with my care. You mentioned that you were thinking of U of Michigan. I say, go for it! But, first, do your homework. Write down the issues that bother you the most, how long you’ve had the symptoms, and the doctors you have seen. And go with an open mind. Take a friend or family member with you—to take notes and to be extra ears
Does this sound reasonable? Can you do this and then let me know what happens?

You might want to read this discussion also:
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/

@autumn12575 I haven’t heard from you and wondered if you’ve learned anything about what’s going on with your health. If you wish, please check in with us. Becky