← Return to Undiagnosed Autoimmune with back pain, spasms, and stiffness

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@jgerstley1

My wife seems to be in a similar boat. Her issues started with monthly sinus infections that would last 10 days. She was diagnosed with Chronic Variable immunodeficiency and started on IVIG years ago for low antibodies. No more sinus infections. 12 years ago started with profound fatigue, low grade fevers, chills and spent years in bed, not able to do much. Pain episodes started 1.5 years ago. She describes the pain as someone operating on her back without anesthesia lasting anywhere from hours to months. The pain usually starts in the back but has started over her eye, the leg ect and then spreads to the rest of her body. She is writhing in bed when the pain is bad and can take extremely high doses of opiods without much help. Last Sept. she spent 12 days on IV dilaudid in the hospital then discharged on IV dilaudid which she took until the episode resolved (2 months). She has been thru withdrawl numerous times as she will not take anything if she can hold off. Other symptoms include intermittent dysphonia (spasms of the vocal cords), intermittent diarrhea and constipation. Worst symptom is the pain but the fatugue, fever and chills are no fun either. Linda spent 4 days at Mayo, that is before the pains started and was a patient at the National Institute of Health for the Undiagnosed Disease Program. She has has an extensive workup from her wonderful immunologist, multiple neurologists, pain specialists, ENT...She has gone 3 months feeling great, then sx return. We have no idea what sets it off or what makes it better. Other Med problems include Hashimotos, Hypertension, premature ovarian failure (menapause at 36), CVID. She has been had extensive genetic testing and tested for Lyme. Still looking for answers.

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Replies to "My wife seems to be in a similar boat. Her issues started with monthly sinus infections..."

@jgerstley1 Good morning. Your wife has had a really rough time—it must be so difficult for both of you. Have you been been back in touch with Mayo or NIH to let the doctors know of the changes? Maybe they could work with your local doctors. Is it possible to get in touch with them?

@jgerstley1 Hello from Connect. I wonder if you’ve found any answers for the problems you wife had. It all sounds so difficult for her. I hope you’ve found out what going on. If it’s OK with you, will you tell us if there’s any positive news? Becky