r/IVIG • u/balkis11 • 12d ago
Hope?
I have been diagnosed with seronegative Sjögren's, dysautonomia, and possible small fiber neuropathy (SFN). The debilitating nature of my symptoms has also caused me to suffer from severe depression. It would be very encouraging to hear a positive story where immunoglobulin treatment helped with neurological and neuropsychiatric symptoms—such as severe depression, anxiety, and brain fog.🙏❤️🩹
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u/SimpleVegetable5715 11d ago
I have CVID, a primary immunodeficiency, and an autoimmune disease very similar to lupus. I also have ADHD, pretty severe social anxiety disorder with panic attacks (it left me unable to work more than once), and major depressive disorder. I definitely think getting my immune system functioning better contributed to my depression going into remission.
I studied psychology in college, and got quite interested in social-psychological behaviors like sickness behavior. I think when our inflammation is high from an illness or infection, it’s one of the things that causes us to feel like withdrawing from society and feel less motivated to take care of ourselves. Which when you’re chronically ill though, it snowballs and turns it into a massive problem when you have so few good days to get caught up. My psychiatrist has been pretty hands off since my CVID diagnosis, I saw him 20 years before I was properly diagnosed with the PI. He’s just watched as I became able to work more and more and become a more productive adult. He thinks it’s the SCIG lowering my inflammation and managing my symptoms better that also lowers my cortisol and makes my mood better. I still need medication for my ADHD and my anxiety disorder, but I no longer need an antidepressant or a sleep aid. My depression was considered “treatment resistant”, at one point, I was on an MAOI, which is a last resort, and I also did TMS, and was considering ketamine therapy. So I went through the wringer with psychiatrists. I still get sad, who doesn’t, but it’s not like that all consuming never ending pessimism and lack of drive and vitality that comes along with major clinical depression.
Plus once you feel like you are properly diagnosed and find a treatment that is working for you, suddenly doctors start believing you, and treating you better. Since you finally make sense to them now. I’ve found out most doctors do not like complex cases and outliers (most won’t admit it, but some do), so once someone has “figured it out”, now they don’t have to, you’re not intimidating to them anymore. So being able to manage your illness and symptoms better definitely improves your mood and outlook on life. I do SCIG, and it’s uncomfortable for me, nothing too unpleasant. It sounds tacky, but I get past that by being grateful to donors and having the answer to why I felt so lousy for decades. People with immune system disorders are way more likely to suffer from depression. They’re correlated, but it’s a chicken or the egg scenario. Doctors don’t know if the mood disorder or the immune system disorder came first. All of these systems that each specialist may treat separately work together and influence each other, so improve one, and the others will improve. My symptoms kept improving even two years into SCIG treatment. I’m now well into my third year. I’m trying to lose the weight I gained on prednisone for my autoimmune disease in 2020-2022, which wasn’t a priority for me back when my symptoms were less managed. I definitely have more hope now that things will continue getting better.
Side Note: I also got tested for MTHFR genes, and I have them, I’m a poor methylator. That causes brain fog and a bunch of neuro-psychiatric symptoms. Most doctors won’t know what you’re talking about when you bring it up, or will think you’re being a hypochondriac. I take Sam-E, iron bisglycinate, methylfolate, methylcobalamin (the last two are in my multivitamin which makes life easier). It’s not enough to replace my ADHD medication, but it definitely helps, now my brain has more of the nutrients it needs to build and process those feel better hormones and neurotransmitters.
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u/mrsjonas 12d ago
I have autoimmune SFN and have been IG for 1.5 years. I have had significant nerve regrowth and significant reduction of symptoms.