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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Are there discussions for people with PMR

REPLY
@kathylovgren

Are there discussions for people with PMR

Jump to this post

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/

REPLY

@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!

REPLY
@johnbishop

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/

Jump to this post

Dx with PMR 2 months ago. I am unable to raise my arms above shoulder height. Inability to wash and blow dry hair, extend arms, put on clothing or jackets. Does anyone else have this range of motion problem with arms?

Thanks for any respies.

REPLY

Get her to Mayo clinic. I have autoimmune. And I have none of those problems that you said she has. The best of luck.

REPLY
@roro134990

Dx with PMR 2 months ago. I am unable to raise my arms above shoulder height. Inability to wash and blow dry hair, extend arms, put on clothing or jackets. Does anyone else have this range of motion problem with arms?

Thanks for any respies.

Jump to this post

Welcome @roro134990, I'm no expert but I had similar problems the first time I had PMR but it was before I was diagnosed and started on prednisone. Once I began the treatment, the range of motion wasn't a problem unless the PMR pain was not being controlled. You might find some help in one of the discussions in the Polymyalgia Rheumatica (PMR) Support Group listed here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

Have you discussed the problem with your doctor or rheumatologist? What treatment were you started on, prednisone? What dose?

REPLY
@bonniekay52

Get her to Mayo clinic. I have autoimmune. And I have none of those problems that you said she has. The best of luck.

Jump to this post

Welcome @bonniekay52, Were you replying to the person who started this discussion - @3les54? I'm not sure they are still following Connect as they were last active in 2020.

What autoimmune condition do you have?

REPLY
@roro134990

Dx with PMR 2 months ago. I am unable to raise my arms above shoulder height. Inability to wash and blow dry hair, extend arms, put on clothing or jackets. Does anyone else have this range of motion problem with arms?

Thanks for any respies.

Jump to this post

Look up Anthony William Brain Saver…he cures doctors through food, could be helpful. Lots of good luck and wishes‼️Marianne

REPLY
@roro134990

Dx with PMR 2 months ago. I am unable to raise my arms above shoulder height. Inability to wash and blow dry hair, extend arms, put on clothing or jackets. Does anyone else have this range of motion problem with arms?

Thanks for any respies.

Jump to this post

This exact thing happened to me and come to find out it was because my cervical spine had crumbled and was pressing in two areas on my spinal cord. I now have a plate and 8 screws there. So you don’t need to ignore this

REPLY
@kathylovgren

Are there discussions for people with PMR

Jump to this post

Yes right here. Welcome…..

REPLY
Please sign in or register to post a reply.