Newly diagnosed and need help

[lindsay]

My name is Lindsay. My mother was recently diagnosed with CVID. She is still waiting on approval from insurance before she can even begin therapy.

There is SOMETHING else going on with her.....or something in addition to the CVID. She has been to numerous types of doctors, had CT scans, blood work etc and none of them can find what is wrong. (other than the CVID) I am listing her symptoms below. ANY suggestions are welcome. We know so little about this disease but we NEED answers. She can not go on feeling this way.


Symptoms
*extreme fatigue
* shortness of breath after simple tasks
* EXTREME hoarseness.....comes and goes but sometimes is so bad she is difficult to understand.
* Just feeling BLAH all the time
* bloating feeling of and on....almost like trapped gas


The last 3 Blood tests have shown an increase in white blood cells


* She has given the pneumonia shot to see if that would boost her numbers .....It did little of nothing.....501 (originally) - after shot went to 511. (no where near where it needs to be).


SO WHEERE DO WE GO FROM HERE?

Any ideas or help....direction you might could point us would be amazing!


Thanks,
Lindsay



 



     

[thesauce]

Before treatment, I had extreme fatigue, shortness of breath in doing anything. I did not get the other problems. I did have chronic nausea. After starting Hizentra (Sub-Q treatment) the fatigue and shortness of breath went away. I do get sleepy and nauseous for a couple of days after treatment, but it isn't as bad as before treatment.  As far as the white count going up, she might have an infection that she can't fight.
Susan