Thank you too for your input!!!

Wow, I can't believe how many of us have the same symptoms!!! Kelli you did a great job!!!! Thank you:) I also think that IVIG and subq experiences would be a great idea. Kathy
PS - Love your new picture - the hat is GREAT!!!!

Awww thank you lol. Well my hair is falling out and I love hats so when I saw this one it was A MUST! I also got a Koala beanie with ears haha. Will post a pic as soon as I wear it :)

I too think a SCIG and IVIG side effect would be indispensable. We can all put what helps us through it - some people take steroids, some hydration works, some slowing the speed down, etc.

I feel like printing it out to show my doctor. He keeps telling me the pain associated with CVID is ONLY related to the IVIG therapy and lasts only a day or so. It is caused by the swelling of the joints from the water in the IVIG.

I disagree and keep telling him about my pain and fatigue issues.

I think that's a great idea, I might do that too!!! My doctor still feels I should be able to work a full time job:) I'd like to see him live with this and work a f/t job.....

Happy Holidays to all!!!!

bump for newbies :)

kelli that is great! Its so nice to see that I'm not the only one with my issues and that I'm not nuts like most of the doctors used to tell me. I know you're not always feeling well and it is great that you took the time to do this for us! Thank you!

I did have someone suggest putting it on IDF also that way we could get MORE responses :)

Kelli,

I also have been diagnosed with CVID can you please send me the form? My email address is pnnylndsy@yahoo.com

Thanks again for your hard work!
Penny Lindsey

Welcome...just in case we have posted permanent links to the form and results here in CVID Reference Links as well as on my blog:

http://secretdragonfly.blogspot.com/2010/12/cvid-symptom-questionnaire.html

Hate that you were diagnosed but welcome. This is a GREAT place for people with this disease.

Hi Kelli, sorry I wasn't able to complete the survey when you sent it to me. Things got crazy busy around then but I did just complete it via your blog. Wow! I didn't know so many of those things were linked to CVID!! I thought each part of my body was independently going haywire haha now I realize it is actually all part of an odd orchestration by Maestro CVID!!
I used to suffer alot with sinus and ear infections but realize I haven't much in the last couple of years. For the past year and a half I would say that I feel like I'm on the verge of getting sick (cold/flu) but don't really fully get sick. But don't ever fully get better either. I'll have a day or two that I feel good then bam! I feel drained and teetering on being sick. Even since I started treatments (subq) I don't feel any different and the past four days I have had a low grade fever that is really annoying and zapping my energy big time. Has anyone else gone through this?
Thanks Kelli for taking the time to put the survey together, it is very interesting and helpful even for newbies that aren't sure what any of this is haha.

Aw thank you Dragonfly! All input is great. I see we actually got 3 more responses. If people see things that should be added, symptoms, let me know, I can edit anytime :)

Bump for newbies :) We have several more new people. I have placed the form permanently on my blog as well. Having all these responses is AWESOME. I still need to make some tweaks per Marks recommendations. Will get to is soon :)

http://secretdragonfly.blogspot.com/2010/12/cvid-symptom-questionnaire.html

@dragonfly
i know excatly what you are saying, that is how i have felt the past few yrs. i have had "spells" through my life like that, but the last few yrs have been really bad the last yr has been constant. i have been on ivig since 07 and i still feel like i have the flu most days. i am hoping it is a flare that will pass, it just seems to be taking longer to pass than in the past.
i have been sick a lot the past yr, but even days without an active infection are flu like days. i have 2-3 days per infusion cycle that i don't feel like i have the flu. after starting ivig i had a really good yr so that's why i keep thinking this is just another bad flare that will settle down soon hopefully. and my doc is upping the ivig dose on a regular basis trying to find the right dose to get me flare free.
my docs (internist and hemo) think i am picking up viruses between the bacterial infections. whatever it is...it is cvid...

Great job, Kelli. Nice to know I am not alone with my many & varied symptoms. Now they tell me that I also have Celiac Disease. Going Gluten Free to see what happens