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

@molly48823

Mostly back to normal, except occasional sometimes routine fatigue. And hot weather just does me in. I continued to work as I could at a significantly reduced % effort and doing a lot from home. Am still working very part time job in same field. Yard work went by the wayside as did housework but I never liked that anyway so this was a good excuse! I am in remission altho my primary doctor (a rheumatologist) doesn’t seem to like that term. I encourage you to completely take it easy for a few months to let your body focus on getting better. Also, ask to meet with a dietician who specializes in kidney disease to discuss your diet and what if anything needs to change. If the docs direct such a consult, your insurance should pay for it. Pls doesn’t hesitate to ask any questions or we can talk by phone when you’re up to it. Just take care of yourself and let your body heal itself.

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Just checking in to see how you are doing. I know the first few days, which become weeks, can be overwhelming. Please try to take it a day at a time so you are not overwhelmed. You may not have heard about an important, sort of informal, way of dealing with chronic illness that may benefit you: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1 . Will help you, and your family help you, deal with this huge change in your life and lifestyle.

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@astaingegerdm

@horselover7216 – Hi! I have followed your posts and conversations. I understand that you are very sick with possible autoimmune encephalitis- correct? I’m so impressed with your detailed posts- it must be very hard – but you are angry and that helps you trying to find out how to get better. Encephalitis of any kind will cause panic in your central nervous system. I also understand that all testing you have had still does not pinpoint the cause. I had hallucinations like yours once/ after a surgery where I from unknown causes got fluid in my lungs and less oxygen to the brain.
The impression I get is that you don’t understand why you get all these problems- such as inability to urinate and fecal incontinence in addition to everything else. What I would do- if I were you- is asking the doctors- especially the neurologist- why each symptom occurs- write questions down and write down answers- or have someone write for you- so you can go over these answers when you get confused and angry. I so hope for you that you get back to normal soon!!

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Hi
I'm sorry, I want too reply but my brain is just empty.. Cloudy.. Can't think of anything anymore.. Can't even type..
Feels like my body is just shutting down and can barely feel anything anymore… Not even emotions.
I went from out off control anger, too nothing…
I can just shut my eyes and just kind off drift off…

How do you go from, severe pain too just a dull ache? It's like it's there, but not there; if you know what I mean..

How do go from pure anger, too barely anything..

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I am so sorry for what your wife has gone through. My autoimmune disease Errosive Lichen Planus I have had is best treated in University hospital and specialists in those areas. I’m starting my 5th decade. I get better and then have flares. If your HMO cannot diagnose you’re wife’s problems and they appear very sever perhaps asking for a referral to A large medical teaching hospital will help. Most will require all her medical history. My very best wishes for a remission. I know how frustrating these autoimmune diseases are. I have good years and bad years and frustration continues, but their are medical people who care!

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Thinking about you and hoping your treatment/therapy is going well.

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I am sorry to hear about your wife, but My own mystery started in September with getting the Shingrix Shot first dose, then second dose in December and I have declined since them. Many, many symptoms, including double vision, nausea and burning throughout the body upon resting which lasted 3 months and that finally went away. Dizzy, loss of balance, weak legs, weak arms, Depression/Anxiety doubled panic attacks every day, and no one can figure out what is wrong. Had brain MRS, cervical spine MRI, EEG, missed two appointments for EMG due to being hospitalized for severe depression panic attacks, etc. Haven't had that problem in years. Also very weak, twitching, muscle spasms. Twitch finally stopped a week or so ago. Have an appointment with a specialist in Atlanta for eyes, don't know what the EMG test will result in but I was an active 78 year old that went to the Y 5 days a week until November when all this started, and all doctors think it's in my head. I know my body, and know when I don't feel right. I still blame the Shingrix Vaccine and wish I never took it. I have not proof but from reading others problems with the vaccine, and now afraid to take any of it. I think Big Pharma pushes junk without thorough testing! My opinion only and am still not better at all. Finally can walk somewhat without losing balance but not great. Think twice before taking shots. We took the flu shot and hubby and I both had pneumonia shots and he got pneumonia 2 years ago and this year we both got the flu and he got pneumonia again, and was hospitalized for the second time. Hope your wife gets will. Sorry this has happened to her.

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@dablues

I am sorry to hear about your wife, but My own mystery started in September with getting the Shingrix Shot first dose, then second dose in December and I have declined since them. Many, many symptoms, including double vision, nausea and burning throughout the body upon resting which lasted 3 months and that finally went away. Dizzy, loss of balance, weak legs, weak arms, Depression/Anxiety doubled panic attacks every day, and no one can figure out what is wrong. Had brain MRS, cervical spine MRI, EEG, missed two appointments for EMG due to being hospitalized for severe depression panic attacks, etc. Haven't had that problem in years. Also very weak, twitching, muscle spasms. Twitch finally stopped a week or so ago. Have an appointment with a specialist in Atlanta for eyes, don't know what the EMG test will result in but I was an active 78 year old that went to the Y 5 days a week until November when all this started, and all doctors think it's in my head. I know my body, and know when I don't feel right. I still blame the Shingrix Vaccine and wish I never took it. I have not proof but from reading others problems with the vaccine, and now afraid to take any of it. I think Big Pharma pushes junk without thorough testing! My opinion only and am still not better at all. Finally can walk somewhat without losing balance but not great. Think twice before taking shots. We took the flu shot and hubby and I both had pneumonia shots and he got pneumonia 2 years ago and this year we both got the flu and he got pneumonia again, and was hospitalized for the second time. Hope your wife gets will. Sorry this has happened to her.

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My second Shingrix vaccination triggered Giant Cell Ateritis, a rare autoimmune disease. It is an inflammation of the temporal artery and is considered serious unless it is treated with prednisone. This is my story and it is probably quite different from your own. Initially, doctor thought it was Polymyalgia Rheumatica,also autoimmune. They are both treated by a Rheumatologist. If you research both, maybe the symptoms could rule these out diseases. Good luck.

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@geniecm

My second Shingrix vaccination triggered Giant Cell Ateritis, a rare autoimmune disease. It is an inflammation of the temporal artery and is considered serious unless it is treated with prednisone. This is my story and it is probably quite different from your own. Initially, doctor thought it was Polymyalgia Rheumatica,also autoimmune. They are both treated by a Rheumatologist. If you research both, maybe the symptoms could rule these out diseases. Good luck.

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Thank you for your reply. Been to so many doctors and they can't find anything. We each know our bodies and this is ridiculous! Will continue to try and find out until I exhaust all alternatives. Appreciate your input. Haven't been to a Rheumatologist but do have arthritis in neck, spine, and other joints.

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@american

Can I ask you what kind of specialist your wife saw to find she has CMS? Who would you see at USC.
I have the same symptoms, not that severe. Saw hematologist and Rhematologist, none know what's wrong, except blood tests every six months. I don't know if they do care or not. It's been almost two years and think I should find new good doctors who care. I do have HMO but in Los Angeles the medical group or network are the one who control every thing. I'm now ready to go to outside the insurance and pay my own. I have to control my own health not some medical groups who only care about $$$

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Same here american, I have hmo medical group, went to hematology, rehmotolgy and they don't know what's wrong with me and why my white blood is low.
I went to UCLA rehm in burbank and was told it would be $100, spent 5mn with the doctor and now I get a bill for $576.0. I think they're forcing us to buy supplement insurance. I'm in Los Angeles and the hmo would not refer me to USC or UCLA or Cedar Sinai.
I started to have swelling and redness on the side of my leg above the foot and it's getting larger. The bottom of my foot and going higher large red batches. Hematologist referred me to Dr. Church at Children Hospital, he see adults too for Allergy and Immunology.
He wouldn't give appt until he reviews my records. I've been in this mess for three years now and don't know what to do. Please tell me how to maneuver the hmo system

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@jsrbr

I have recently been diagnosed with multiple Auto immune disorders (like back to back). I have also had ton of tests, blood work, and specialists this past year but decided to see a functional medicine doctor last month. She spent 3 hours with me and my detailed symptoms. She ordered several non-conventional tests including heavy metal levels and EBV. May be worth a try for your wife. Functional medicine doctors are focused on root cause of illness so may be a good adjunct to what you are already doing. Hope that’s helpful! Prayers for your wife!!

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where do you find one and are they approved by HMO?

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Update on the burning situation that started this mess. Still say Shingrix is the culprit but will see after some more tests. Burning FINALLY stopped. Weird. Lasted from November after my 2nd dose of the Shingrix and finally stopped in February. Now to me that is weird! Also the off balance of my legs and weakness is not as bad. So, does anyone know if it is Shingrix how long do symptoms last? If it isn't Shingrix then the EMG should tell me what it is and the Double Vision am nervouse about the appointment tomorrow to see what the specialist has to say!

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@dablues

Update on the burning situation that started this mess. Still say Shingrix is the culprit but will see after some more tests. Burning FINALLY stopped. Weird. Lasted from November after my 2nd dose of the Shingrix and finally stopped in February. Now to me that is weird! Also the off balance of my legs and weakness is not as bad. So, does anyone know if it is Shingrix how long do symptoms last? If it isn't Shingrix then the EMG should tell me what it is and the Double Vision am nervouse about the appointment tomorrow to see what the specialist has to say!

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@dablues My 2nd shot gave me a sore arm for about a month but thats all wishing you well tomorrow

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@lioness

@dablues My 2nd shot gave me a sore arm for about a month but thats all wishing you well tomorrow

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Thank you! Very nervous about the results!

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@dablues

Thank you! Very nervous about the results!

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Update, please!

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@geniecm

Update, please!

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They eye doctor said I need prism glasses, cataracts are ready, and he is testing me for Myasthenia Gravis, He's worried about my loss of balance which is much better. Still I think the EMG test will be the tell all. I told him I thought The Shingrix Vaccine started all my symptoms but of course I can be wrong. Just weird 4 months of burning that magically went away, loss of balance which was severe for 4 months getting better. Yet, the last test should be the tell all I hope.

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@dablues

They eye doctor said I need prism glasses, cataracts are ready, and he is testing me for Myasthenia Gravis, He's worried about my loss of balance which is much better. Still I think the EMG test will be the tell all. I told him I thought The Shingrix Vaccine started all my symptoms but of course I can be wrong. Just weird 4 months of burning that magically went away, loss of balance which was severe for 4 months getting better. Yet, the last test should be the tell all I hope.

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@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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