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Does anyone else have CVID?

Neuropathy | Last Active: Jul 4, 2023 | Replies (14)

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Thanks, @lisa53 - seems we've been on a similar path.

I stopped gluten/dairy and many other food groups years ago, not even knowing my GI symptoms were also CVID-related. My migraines have thankfully stopped, but the SFN still continues - and, it's progressing. (I've had it for over 15+ years now.) I was tested for celiac and it was negative. I've had a lot of genetic testing done lately and nothing about celiac disease.

My docs were able to get approval for a higher dose of IVIG, but still only about half of what Dr. Oaklander recommended. I was on it for about a year. Not sure I noticed much difference. I'm at the point where I might go back on it, to see if there's any improvement.

Hoping more research comes about with the CVID condition as it seems there are many non-infectious symptoms that accompany it.

Thanks again for joining the conversation.

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Replies to "Thanks, @lisa53 - seems we've been on a similar path. I stopped gluten/dairy and many other..."

Have you been tested for diabetes? Just a thought. That runs in my family and it causes neuropathy in some patients. I think it is the most common cause of the type of neuropathy that I was diagnosed with.
Sometimes, doctors will miss common things when they know you have a rare genetic disease. That has been my experience anyway.
They missed my vitamin deficiencies, asthma, and anemia for well over a year - despite a history of those in my chart. They also thought my back problem was some rare, strange, type that usually occurs in men. Anyway, once they sorted all that out, I was much improved.
I have come to understand that my medical situation is complicated. I no longer feel angry when something gets missed. I have learned to advocate for myself. I am grateful for the doctors who view me not as their worst case scenario (patients that they can not cure -but only manage -are not what they envision, I am sure, when they go to medical school - and that some of us simply stump them, has to be ego-deflating) but as an interesting case. Those doctors become a partner and can be enormously supportive. I have learned, also, not to give up, that the next doctor or specialist may know exactly how to help you. Like my PC who "guessed" that the GF pizza was cross-contaminated. She changed my life. Or, the doctor who thought to test my immune system to begin with. I owe a great deal to those doctors who listened, who went the extra mile. I try to bear in mind that the doctors who fail me might just be a hero to someone else. So, above all else I remain kind. I try to help other patients too, when I can. I know full well that very many of us have no one left in their corner - so many friends and family just can't hang. It is a lot. It is a lot for me some days. I am glad I could help.
Anyway, good luck to you.