Hi, everyone.
In doing research, CVID can be viewed as an "umbrella" with RA, lupus, and lymphoma under the umbrella. Has anyone else heard this? Only my immunologist acknowledges this as possible and all are caused by the CVID. My rheumatologist downplays this concern and is noncommittal: "let's not be worried about what may or may not happen". I am an RN and my husband a physician ane even WE have a hard time navigating all this! Aaargh!
I've had the CVID 12 years and the RA about 3 years. I'm sorry, but I can't help worrying about what's around the corner. I'm trying really hard not to worry and to put on a brave front. To be honest, I believe my life is going to be shortened with all this. I am a realist...I am 57 now. I'd love to hear back from others who may struggle with this.
I was diagnosed with CVID 32 years ago and have never remotely heard that, "CVID can be viewed as an "umbrella" with RA, lupus, and lymphoma under the umbrella. My immunologist is also a Rhumatoligist by training, but he is really an immunologist. He is active in CIS and has give major addresses there.
The only thing I can try and make sense of your quote is that patient with primary immune diseases often have autoimmune diseases as well.
If you heard you immunoligist correctly, you may want to consider a new immunologist; one with specialized clinical immunoligy training.
The Following User Says Thank You to markincleveland For This Useful Post: NellieNunu (04-05-2012)
Hi, everyone.
In doing research, CVID can be viewed as an "umbrella" with RA, lupus, and lymphoma under the umbrella. Has anyone else heard this? Only my immunologist acknowledges this as possible and all are caused by the CVID. My rheumatologist downplays this concern and is noncommittal: "let's not be worried about what may or may not happen". I am an RN and my husband a physician ane even WE have a hard time navigating all this! Aaargh!
I've had the CVID 12 years and the RA about 3 years. I'm sorry, but I can't help worrying about what's around the corner. I'm trying really hard not to worry and to put on a brave front. To be honest, I believe my life is going to be shortened with all this. I am a realist...I am 57 now. I'd love to hear back from others who may struggle with this.
--NellieNunu
We are at a greater risk of developing ALL autoimmune diseases, not just the one's listed. The trick is proper diagnosis - we can throw false positives because we receive thousands of other peoples antibodies or we can throw false negatives because we fail to make enough of our own. You need an awesome diagnostician - one who looks at ALL facets. I tend to agree with your doctor, why waste a precious life worrying about "what if's". Many people with CVID live a very normal life without developing anything.
The Following User Says Thank You to cvidmama For This Useful Post: NellieNunu (04-05-2012)
Yes as have I. I developed arthritis at 37 literally OVERNIGHT. Woke up and couldn't close my hands. Then came the deadly lung disease caused by CVID. Now, I have granulomas too numerous to count in my abdomen and have to meet with a surgeon next week to discuss a biopsy. So, trust me, I GET it. I am only 40 with an 8 year old daughter a full time job and NO local support. All of my help are my virtual angels. Might I suggest counseling? I wholeheartedly believe that those of us with chronic health issues seek counseling. Being ill can be a full time job in itself.
The following user gives a hug of support to cvidmama: NellieNunu (04-05-2012)
I, too, developed the RA literally overnight. Acute onset of bilateral carpal tunnel syndrome. I had "lobster claws" for 3 months before I could get in to see a rheumatologist. My two daughters had to bathe me and help with my hygiene.
It was humiliating. Fortunately, once I was treated, I went into remission. Problem now is the RA meds have caused glaucoma, dry eye disease, and cataracts. No decisions have been made yet as to changing meds.
Yes, I totally agree this is a full time job. I'm fortunate that my daughters are adults; can not imagine having a young one around.
Don't know how you manage to work with all this going on. I only managed to work for 5-ish years (RN) before I started getting sick again and my immunologist made me retire.
I also feel I have no support except the platitudes; I do get that people have no reference point to understand our illness.
My younger daughter, a psychologist, has been trying forever to get me into therapy OR a site like this. There are no support groups in my area so I started searching for this type of support. Not ready to do therapy...
I'm sorry you are having these new symptoms to deal with and figure out.
Thank you cvidmama for corresponding with me. Means the world to me!
Its called GLILD (Granulomatous Lymphocytic Intersitial Lung Disease). It happens to less than 20% in those of us with CVID. They told me if I get sick I can die. Which I find comical because, well I have CVID
