Fed up

[Hugo1]

I've got hypogammaglobulinanemia n I've just finished 7 days of iv antibiotics but still feel unwell will I go to hospital again..I'm afraid they don't understand me..

[Hidden]

Hi Hugo

So do I..do you also have a lung condition..surely they have your haematologist report..why don’t they understand you??

[spooks36]

Hello Hugo. I am not sure what that is. why does the Dr. not understand you? cheers

[floopyjim]

Hi Hugo, It's very common for doctors (even at consultant level) to not understand Primary Immune Deficiencies. I have Hypogamma as well (CVID) and whenever I end up in a specialist respiratory hospital, most doctors have never heard of most immune deficiencies. It's a rare genetic disease that isn't even taught in medical school so unless a doctor has treated a patient, they often never see one for many, many years.

Hugo - If, after 7 days of oral antibiotics, you still have not improved, please get yourself down to the hospital - you will probably need IV antibiotics to get rid of it before it causes any damage.

[cofdrop-UK]

Good advice from your friends above Hugo. You really must go back if you are not feeling better. Unfortunately with the lesser Known conditions you really have to be your own advocate and make sure they understand your condition, in a diplomatic way of course.

love cx

[peege]

I agree with Cofdrop and floopyjim above.

I suggest you always explain your condition to every medic you have to speak to. They're right in that most aren't trained in the rarer conditions. In my limited experience I'd say 7 days of antibiotic isn't enough for you, at the very least they should do a sputum test to check you're clear & if not to test for which abs to treat it.

Wishing you all the best. P