Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi everyone,
I was diagnosed with CVID about 3 years ago. I was one IVIG and was having terribly side effects. I have been on Hizentra for about a year now and have been feeling a lot better on those treatments. I have still been having terrible nausea and GI problems. My family doctor likes to blame everything on my CVID and my immunologist recently informed me that the GI problems I have been having are not from my treatments.
I went in for a CT scan of the GI/Pelvis and they found a lump. They think it's a swollen lymph node, but I am waiting to get an ultrasound to determine if that is what it actually is. I have been getting terrible pain in that exact area for nearly 2 years now. I have been having excruciating pain in my ribs and particularly in the ribs right near where they found the lump.
I have been having really intense night sweats for the past 8 months, fatigue, and sometimes it almost feels like it's the bones themselves that are tender.
Has anyone else experienced anything like this? Any advice would be really appreciated. This seems like the condition that just keeps on giving.... And not in a good way.
I was diagnosed with CVID about 3 years ago. I was one IVIG and was having terribly side effects. I have been on Hizentra for about a year now and have been feeling a lot better on those treatments. I have still been having terrible nausea and GI problems. My family doctor likes to blame everything on my CVID and my immunologist recently informed me that the GI problems I have been having are not from my treatments.
I went in for a CT scan of the GI/Pelvis and they found a lump. They think it's a swollen lymph node, but I am waiting to get an ultrasound to determine if that is what it actually is. I have been getting terrible pain in that exact area for nearly 2 years now. I have been having excruciating pain in my ribs and particularly in the ribs right near where they found the lump.
I have been having really intense night sweats for the past 8 months, fatigue, and sometimes it almost feels like it's the bones themselves that are tender.
Has anyone else experienced anything like this? Any advice would be really appreciated. This seems like the condition that just keeps on giving.... And not in a good way.
I haven't had the exact problem you are having, but I did have a very negligent GI Dr who continued to treat me for well over a year, with no change in symptoms when he should have referred me to the University Hospital, so I can understand how scary it is to have unknown pain that has gone on much too long before someone believes you, and then have to go through tests and wait for results.
I'm no Dr, and I'm sure there are a number of things ranging from serious to benign that you could be dealing with.
I don't want to give false hope or undue negativity either, but just for example, for years I have been having unexplained night sweats and fatigue and my Immuno runs every test under the sun for thyroid, hormone, early menopause, cancers, and who knows what else...and nothing ever shows up...Just some freak thing thus far, that he monitors regularly to be safe.
With CVID, I think you never really can tell what weird thing your body might do.
My suggestion to you would be to take lots of deep breaths all weekend, maybe watch some movies or read or whatever might distract you for a bit, b/c worrying over the weekend isn't going to change your test results, and eat at least one pint of Ben and Jerry's...maybe 2 (It's the universal cure for all ailments)
Whatever the results, your Dr will put together a treatment plan, and if you are not pleased, you can always get a 2nd opinion....
The group will be here to help and support you, whatever the diagnosis, so please keep us updated!
Be Well,
Anna
Big hugs and much love.
The price of free healthcare... It can take over 6 months to get things like an ultrasound done.
I will keep you all updated! And I really appreciate the support. There are just some things you can't talk about with people who have not walk a mile in your shoes.
Going to the Mayo Clinic is great for difficult cases and they are an amazing hospital. Please keep in mind that they typically have a 3 month waiting period, so it wouldn't hurt to set up a consult now, because you can always cancel.
Again, for now, I say go for movies, ice cream, and if that is your dog in your avatar, lots of cuddles!
Sending good thoughts
:) Anna
If you can, go to the Mayo Clinic. If nothing else you will come away with a better understanding of the disease and how your immune system can control your life. I have found that it makes things a little easier if you really understand what is going on.
Hang in there and push forward as hard as you can, and as long as you can. Keep us posted of your adventures.