Oh my goodness, I am almost levitating! I just got back from my first visit with an allergy/immunologist who understands me and my health issues. After 2 years and 3 months of "doctoring" and going seemingly nowhere I have arrived! He even had a disparaging comment to make about the last place I went to who told me based on the pneumovax challenge I didn't have CVID and didn't need IVIg infusions and that was that. He has ordered ALL my records from the 7-9 Dr.'s I have seen over the past 2 years and he even commented that it looked like I had been seeing enough Dr.'s and that I had had lots of the right tests done but no one to put it all together for me. I couldn't believe my ears! He has ordered lots of lab work, some of which are familiar to me and others that I never heard of. He has asked me to write a letter to my dermatologist to see if the lab checked the biopsy they did for T-cell cutaneous lymphoma which is what showed up in a different form in the biopsy I had done on a rash that I got several months ago. He also told me to go back and have another skin biopsy done to rule the T-cell cutaneous lymphoma out. Honestly, I am shaking out of sheer joy and almost in a state of disbelief over this new turn of events.
I want to THANK ALL OF YOU who have so patiently responded to my posts the past year and a half. Whether you knew it or not, you were the wind beneath my wings so to speak, because w/o this forum I would have crashed and I truly think I would have gone mad! I came here daily and read "my story" and just thought, well at least I know I'm not completely nuts because look at what so and so has written and it fits me to a tee, too. You were right, I just had to keep on trying and going to Dr.'s (as much as I hated to with the responses I was getting) because there would be someone out there who would hear me and help me. Now I can be support for others as they navigate the maize of PIDD land.
He is going to set me up for subQ Ig and asked me which I would prefer, Hizentra or Gammunex-C and I opted for the Gammunex-C. I go back on the 9th of Feb and should get the infusions set up soon after unless all my new blood work indicates otherwise. Now I have to find the strength to straighten up my home because it is a mess with piles of books and papers everywhere since I have been so ill for so long. But I will do it somehow now that I have the possibility of feeling human again.
I had to get to the place where I had little expectations for my life and health and was content just be-ing on my couch day after day and then the universe said to me you have learned your lesson in how to be content in this situation so now you are ready for the next jog on your journey. Whether it leads to healthier days for me or not, I am vindicated in my search for some answers and I know my body (is not me).
Blessings and hugs,
begrateful