Could your husband have sarcoidosis? Or maybe costochondritos? God Bless you both!
Thank you all so much! We are had trouble finding doctors that really understand the extent of AS and we get a lot of ‘it could cause it’ but little else. This has been so helpful and given us a lot to look into!
Here is a very good overview talk about Ankylosing Spondylitis given to patients by a top investigator: https://www.youtube.com/watch?v=KfYPu6T32kU
"Spondyloarthritis Treatments and Outcomes Presented by Michael Weisman MD HD" 2015 118 minutes
The naming has been changing to Spondyloarthritis (SpA). He emphasizes that past categories and naming have been left behind - which tells that knowledge is not settled yet. Patterns of progression (like lower spine first) don't have to occur. He names axial and peripheral as subtypes. The fusing of the neck vertebrae would apparently have slowly taken place over quite a long time.
Others add Irritable Bowel Disease related SpA, as well as types involving eyes or skin.
"Inflammatory bowel diseases and spondyloarthropathies: From pathogenesis to treatment"
There is even a 'non-radiographic axial SpA' which has "the lack of radiographically confirmed sacroiliitis". Overall, there's a lot of variety.
If the husband's chest pain is where the ribs meet the sternum (enthesitis), that is also not uncommon. Enthesitis also occurs in the heel.
(Btw, I think there's a pro golfer who does a drug commercial for psoriatic arthritis, which is an SpA.)
From what I've seen, just about everything can be explained by the Ankylosing Spondylitis. For example, "pain... he feels it in his left hand arm, jaw and chest frequently". AS is known for starting with one sided pain. Also for flares.
Chest/rib pain in AS is infamous (though they naturally have to rule out cardiac problems).
One thing that doesn't fit in is the gallbladder. However, a surgery can stir up the immune system and result in chronic inflammatory conditions in predisposed people... so that's a possible tie in.
Good afternoon, I really cant help you on the dxs or any of that. What I would like to offer is a bit of my story. So, about 13 yrs ago I started having all these crazy symptoms. Severe headaches, Tingling/Numbness in legs and arms, extreme fatigue, stomach issues, and severe dizzy spells. The blood work showed Autoimmune disorder. For a long time I went through a battery of test and blood work and was offered numerous medications, but never got a true dxs. So I gave up, but was still suffering off and on every few months
Just last year, I went back because some of the sxs came back strong. A doctor said that she would like to do an allergy panel on me. She found I had alot of food intolerance, and was allergic to some as well. I changed my diet and felt so much better. I know that this is not the case for everyone but how the doctor explained it to me. Is that when you have a food intolerance your body will handle it for so long. It is like a cup the more you eat of those foods the more it fills up. Sooner or later it overflows and that then affects the rest of your body. I can tell you this doctor was the first to recognize that this could be what it was.
I had an intolerance to yeast, and was allergic to beans, and have a high intolerance to onions which I love so much. I dont know if this is your husbands case but it is always worth the try to rule out the simple things first.
This sounds like Multiple Schlerosis to me - has he been tested? The comorbid gallbladder symptoms, the "MS Hug" referring to tightness and chest pains, and the coming and going of neuro pain all point to MS. Surely they've ruled that out at this point?
I don't know about any of the above. You've had so many tests done. But he's also had his gall bladder out, which means the liver has to work harder than it did before. It may also have affected his pancreas. I'm guessing the gastroenterologist is monitoring his pancreatic enzymes to make sure they're working properly, but you might check. Without a gall bladder fat can be difficult to process, as the liver uses the gall bladder to store excess bile to make sure there's always enough readily available. In short, it might be a nutritional issue, as he may have problems absorbing nutrients after that type of surgery, especially if it affect the pancreas.
Ankylosing spondylitis is a chronic multisystem inflammatory disorder with articular and extraarticular manifestations. There is predilection for axial skeleton, but extraspinal manifestations may include pleuropulmonary involvement, aortitis, and/or cardiac conduction abnormalities.
Regarding lung findings, parenchymal lesions may not be visible in early stages, but progression of disease (on average, 2 decades after onset of symptoms) may lead to airways disease (bronchial wall thickening or traction bronchiectasis), emphysema, interstitial lung disease, and/or upper lobe/apical predominant disease, with or without fibrobullous areas, prone to fungal infection. Symptoms may include cough, dyspnea, fatigue, and occasional hemoptysis. Chest pain may also present in early stages of ankylosing spondylitis, typically pain on inspiration, with mild to moderate reduction of chest wall expansion. Varying levels of fatigue may also result from the inflammation caused by ankylosing spondylitis. The body must expend energy to deal with the inflammation, thus causing fatigue. In addition to the pulmonologist and cardiologist that your husband is currently seeing, he may benefit from seeing a rheumatologist.
You had mentioned your husband was experiencing gastrointestinal symptoms. Ankylosing spondylitis is associated with the HLA-B27 genotype. Between 5-10% of cases of ankylosing spondylitis are associated with inflammatory bowel disease, such as Crohn's disease or ulcerative colitis. Your husband may benefit from seeing a gastroenterologist.