Autoimmune mystery

Posted by 3les54 @3les54, Nov 6, 2019

In mid September, my wife went to the doctor about a sore throat. Not so unusual,since she us a high school teacher and is exposed to a variety of things throughout the year. She was also running a low grade fever, usually in the afternoons, but wasn’t at the time of her visit to the doctor. She was given a short course of antibiotics. While she was there she was persuaded to take a flu and Prevnar 13 shot (she is 65). By the time she got home, a rash developed at the injection site. By the next day, her back was covered with a rash two feet wide by three feet long. It looked like a poison ivy reaction. She continued to work but got weaker by the day. She did not want to go back to the doctor. At the end of September, I took her to the ER because of her deteriorating condition and she was experiencing periodic double vision. They did a pretty full work up on her (including a head and neck cT scan, one with iodine and one without, and xrays). She has mild bronchiectasis and the doctor – focusing on her low grade temperature and white blood cell count concluded she had a mild case of pneumonia. Two powerful antibiotics were prescribed and she was sent home. My wife has never taken much medication, and after three days the antibiotics had pretty much destroyed her stomach. On day four she stopped taking them. She had Abdominal pain and nausea. Her appetite began to fade. The rash was still present a month after it first appeared. Back to the doctor. We were referred to a neurologist, a pulmonologist, a rheumatologist and she underwent extensive testing, including for west Nile, HIV, valley fever, lupus, Sjögren’s, RA, and myasthenia gravis. She tested positive for RA but showed no symptoms of it. Negative on everything else. She continued to decline. I took her back to the ER and they admitted her to the hospital. Her kidneys were beginning to fail. In the hospital, the tests Continued. She could not (and still cannot) tolerate solid food because of the intense nausea. At the hospital she was given three different anti nausea medications through iv. She was even throwing up water. After four days, kidney function improved and the nausea was alleviated by medication. She was sent home. That was three weeks ago. Since then, she has remained very weak and has nausea almost all the time. She ingests only Boost/Ensure and water and occasionally a few tablespoons of cream of wheat. Since this started, she has lost 12 lbs, and is to all intents an invalid. The weight loss has stopped. The rash is gone. Every other day she consumes about 800 -1400 calories. The rest of the time we are lucky if she takes in 300-400. At times, she has muscle pain in her jaws. She can walk only 10 feet unassisted. We are trying major league probiotics, CBC oil and drops, vitamins, and electrolyte supplements. In short, after innumerable visits to the doctor, numerous phone consultations, 74 vials of blood drawn for testing, CT/MRI/X-ray, four days in the hospital, we are no closer to an solution or explanation than we were when we started. The nausea renders her incapable of sleeping more than three hours at a time. She drinks copious amounts of water (dry mouth). Her temperature spikes every afternoon between 6 and 7 pm at 100.5-101.8. Tomorrow we have more blood tests to monitor kidney function, to test for infectious disease, and to do a CT scan of her stomach and abdomen. Needless to say, her career as an AP teacher and Academic Decathlon coach are over. At this point, the best diagnosis we have is a general severe autoimmune disorder. Has anyone experienced anything similar? Our HMO doctors seem to have no definitive answers.

Liked by molly48823

@becsbuddy

@dablues I’m glad to hear that you’re getting better and the burning and balance issues are going away. Be sure to tell us what the results of the last test are!

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Will do!

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@3les54

A diagnosis at last…. It has been determined that my wife has Micro Polyangiitis (MPA)/ANCA Vasculitis. It has done extensive damage to her kidneys and dialysis and an eventual transplant are indicated. Some damage to nerves, lungs, and heart area (not the heart itself) occurred. Hemoglobin has also been negatively affected. She is hospitalized and undergoing treatment. Chemotherapy will likely start today or tomorrow.

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I’m glad she got a diagnosis. 🙏🏼 I was diagnosed with PMR last Aug and it is a brutal beast of a disease. I understand the pain part of your wife and the life change it causes. I’m a mechanic by trade, and very active. PMR has limited me… will continue to pray for your wife.

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@becsbuddy

@dablues I’m glad to hear that you’re getting better and the burning and balance issues are going away. Be sure to tell us what the results of the last test are!

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I'm really, TICKED OFF!. For all the years I've been going to my opthomologist she said I had cataracts but growing slowly. She also said I had a condition that if I needed surgery to have the cataract surgery I would need to tell the surgeon there could be complications, she said something about debris. Each time she took pressure test and said it was fine. I asked her if I had glaucoma and she said no it was a precursor to getting glaucoma. Well they set me up in May for the surgery on cataracts so I called the opthomologist I go to and talked to the nurse and told her that Dr. Adogu said I could have complications of the surgery because of the debris and to tell the surgeon. So, I called TODAY and said I wanted the proper terminology to tell the surgeon what I had. The nurse looked it up and told me "The notes saidIhad capsular Glaucoma -Tseudoev foliation of my Lens. I said she never told me I had glaucoma, so the nurse said she wrote that in my last test. I told her that she said my pressure was fine. I wish people would tell me eactly WHAT is wrong at the time she noticed it which was over 3 years ago. She did not give me any options to have anything done at the time if I wanted to do something. I think that is wrong. Now I have to get the records send to the surgeon and also will make sure they know about this as I will tell them MYSELF! Am I wrong to think I should have been told years ago exactly what was wrong?

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@dablues You should have been told yrs. ago . I was told as soon as my pressures where high . Dr. put me on Latanoprost eye drops at night. I also have macular degeneration. I will say when I was much younger they treated me for suspicious glaucoma but my pressures where always within limits then a Dr took of the meds to see if I really had glaucoma or not I didn't have any irregular pressure readings for almost 40 yrs then all of a sudden my pressures went to over 20 in both eyes this is when she put me on drops . But yes you should have been told at that point . I wasn't on anything when I had my cararacts out this started only 5 yrs ago. Good luck .

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someone here on hmo said hell change and go to USC doctor. Can you [lease tell me how you did it and the name of the doctor. I have and hmo also with Regal medical group and they don't have quality doctors. My family doctor is a new graduate replaced my good doctor who moved to Virginia. This doctor is learning on me and I would love to change him. Thank you

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I don't know why no one responds to my question? I guess no one see me?

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@lioness

@dablues You should have been told yrs. ago . I was told as soon as my pressures where high . Dr. put me on Latanoprost eye drops at night. I also have macular degeneration. I will say when I was much younger they treated me for suspicious glaucoma but my pressures where always within limits then a Dr took of the meds to see if I really had glaucoma or not I didn't have any irregular pressure readings for almost 40 yrs then all of a sudden my pressures went to over 20 in both eyes this is when she put me on drops . But yes you should have been told at that point . I wasn't on anything when I had my cararacts out this started only 5 yrs ago. Good luck .

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Top me that is incompentency! I also had a Cat Scan done and was told it was fine yet when I got the report they said something about my aorta that wasn't fine and I wasn't told. I forwarded the results to my family doctor.

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@american

I don't know why no one responds to my question? I guess no one see me?

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I see you but maybe no one has the answer. I don't know what a USC doctor is or I would answer your question. I have no in Network doctors where I live in Georgia. I thought when I moved I could go to any doctor according to my plan and yes I can, but if they are not in Network, then they pay nothing until deductible is met and that is thousands of dollars.

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@american

someone here on hmo said hell change and go to USC doctor. Can you [lease tell me how you did it and the name of the doctor. I have and hmo also with Regal medical group and they don't have quality doctors. My family doctor is a new graduate replaced my good doctor who moved to Virginia. This doctor is learning on me and I would love to change him. Thank you

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Good morning @american . It sounds as though you are really frustrated with the situation you are in. I went back through the posts but couldn’t find one that mentioned HMO’s. Have you tried calling your insurance company and explaining your situation? Maybe they know of a doctor that you could see or refer you to a doctor at a large medical center. I might also suggest that you try to work with your new family doctor. New physicians have so much knowledge that they got in school. You’ll just need to put everything together in a nice, concise way. If you’re interested in an appointment with the Mayo
Clinic, just click on this link. It has information on the Arizona. Minnesota, and Florida clinics.
http://mayocl.in/1mtmR63
Let me know how things turn out for you

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@dablues

I see you but maybe no one has the answer. I don't know what a USC doctor is or I would answer your question. I have no in Network doctors where I live in Georgia. I thought when I moved I could go to any doctor according to my plan and yes I can, but if they are not in Network, then they pay nothing until deductible is met and that is thousands of dollars.

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@dablues I don't know who replied to USC Dr . but in Calif it stands for University of California but don't know .

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Are there discussions for people with PMR

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@kathylovgren

Are there discussions for people with PMR

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Hello @kathylovgren, Welcome to Connect. Here is a link to the discussion for PMR where you can meet other members including myself that have PMR, ask questions and share experiences.

> Groups > Polymyalgia Rheumatica (PMR) > Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/

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@3les54 Just checking to see how your wife is doing. Maybe you could send a reply to @molly48823 . She would especially like to know. Hope all is well and you’re isolating yourselves!

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