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Husband’s Mystery Illness

I am hoping someone out there may be able to help - we are at the point of desperation !

A little over a year ago my husband started feeing ‘out of it’ - tired, foggy in the head, lethargic. He got lots of blood work and found out he had high sed rates, and then shortly after we found out he had huge gallstones and a massive gallbladder. He had it removed in March.

About a month after he had a weird attack of pain in his chest and shortness of breath- went to the hospital and they found nothing. Then this kept happening, until he ultimately had an endoscopy, Mrcp to check for excess stones, a heart cath, a heart MRI and more CTs and MRIs than I can reMember. He had a loop monitor put in to monitor his heart (totally norma after 3 months) and through all of this was diagnosed with Ankylosing Spondylitis (he has minimal if any back pain but does has a few fused vertebrae in his neck and does have stiffness.

His symptoms have only worsened over the past few months. He has constant rib pain on both sides, but mainly the left, gets frequent headaches and face/jaw/left Arm pain (pulmonologist and cardiologist have given him the all clear from their perspectives), he is having decreased lung capacity, ransom stomach issues and often feels fatigued. He will have flares / attacks where his chest will hurt a lot.

Blood tests and scans all come back normal and he just keeps getting worse. We are going to a neurologist this week (he had brain MRIs two years ago that showed nothing; but when he presses on the spot where the looop recorder was he feels pain in his arm so we think maybe part can be nerve damage but doesn’t explain the pre-monitor pains). We are getting a new rheumatologist to help get new perspectives and are at the point of going to the Mayo Clinic if the neurolo can’t help.

We are at a loss and it is consuming all of our lives ( he is out of work a lot and we have 2 kids under 3). any suggestions of what to look at next would be appreciated.

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Avatar universal
Could your husband have sarcoidosis? Or maybe costochondritos? God Bless you both!
Helpful - 0
Avatar universal
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!
Helpful - 0
Glad to be of help, RK. Don't hesitate to ask any questions or post any updates.

This might help:

...though you and your husband can eventually become pretty fair experts yourselves with all of the info that is freely available. There are also lots of fellow patient stories around, which can be illuminating - and even comforting in a way. Many use mindfulness types of things.

Btw, as far as his chest pains, enthesitis (inflammation of wherever any ligaments or tendons attach to bone) in SpA is discussed where the ribs meet sternum or spine -- but logically there's no reason it couldn't also occur where chest muscle tendons make their own attachments.

You can keep a log to try and identify any triggers for flares. Oral NSAIDS are probably bad for his stomach problems, but maybe topicals can be effective at any places of pain that are near the surface. It's said in general, for these types of pain, opioids are inferior to NSAIDS.

1081992 tn?1389903637
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.)

Helpful - 0
1081992 tn?1389903637
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.
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As I said, people are throwing all kinds of very scary things at this person, and I don't claim to have any idea what's going on, but we do know the gallbladder went on and, as gallstones also affect the pancreas adversely in many people, looking at nutrition is still something I'd look into.  
No one can claim to know what is going on. Changing your diet though and eating healthier can not have adverse effects that is why that was my suggestion.
Paxiled, are you saying that when the man's doctor diagnosed Ankylosing Spondylitis, that was "throwing all kinds of very scary things at this person"?
Avatar universal
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.
Helpful - 0
Well spoken, SeizureAdvocate. In fact, what is most discussed in relation to Ankylosing Spondylitis is a low starch diet. There is a starch loving bacteria in the gut called Klebsiella pneumoniae. Part of its surface is very similar to part of the surface of certain cells found in certain people (which is the HLA-B27 mentioned above). Therefore, when their body mounts an attack against the Klebsiella, it also acts against some of their own cells -- and creates systemic inflammation, and even bone generation. The latter is why spinal bones fuse and that can also create spurs/stenosis that impinges on nerves.

E.g.: "The association of HLA-B27 and Klebsiella pneumoniae in ankylosing spondylitis: A systematic review" 2018 in the journal Microbial Pathogenesis

This theory is not quite proven, and some or many docs might not mention it to patients. Patients do discuss it with each other and some, but not all, find a great improvement on low starch. Some sufferers also eliminate particular foods, as you do with onions. As always with the immune system, there is also more added complexity.

Ankylosing Spondylitis = spine inflammation that ends up making the person stooped forward

"molecular mimicry" = the process by which the immune system attacks its own cells that look like parts of invaders
Wow I was not aware. I just knew that based on research our diets often play a key role in our health. Guess for helping me be more informed.
13167 tn?1327194124
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?
Helpful - 0
Oddly we had a neurologist appt today and they basically said they didn’t think it was that and refused to do any testing for it so we are going for another opinion as we have been trying to see if it that for a while
I think seeking a second opinion is a great idea.  IMHO,  they at least need to test and rule out MS.
Avatar universal
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.  
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Avatar universal
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.
Helpful - 0
Thank you- we have already seen a rheumatologist and he has been to the GI many times.  He feels a lot of his pain is very nerve related and he feels it in his left hand arm, jaw and chest frequently.
In that case, consider MRI or CT cervical spine without contrast to rule out neural foraminal encroachment.
If MRI and/or CT denied by insurance company, consider radiographs of cervical spine with AP, lateral, and oblique views, the latter which are necessary for ruling out neural foraminal encroachment.
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