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.

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@becsbuddy

@horselover7216 Good morning. All of this must be so difficult for you. And your parents. You mentioned having an MRI—do you know if was ‘with’ contrast (dye)? The physicians here have to use contrast/dye with my brain just to make sure they can see everything. You also mentioned that you’ve not eaten since September 2017. And you’ve been on an NG tube this whole time? And you’re not sleeping? Wow, sleep deprivation, alone, can cause problems. I certainly hope someone can find answers for you.
I agree with @johnbishop suggestion of the TED talk (see link above). I read the book and it’s fascinating. Please stay in touch with us

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Hi.
No it was a normal mri. Think they only use contrast with ct (cat scans)

My mood is just getting worse and I'm getting weaker and weaker physically and mentally.
I had a breakdown that has now pushed me back too being unresponsive again.
I keep seeing and hearing stuff still and it's hard!
My NG tube was put back in in the 3rd day without fluids, meds or feed.
I'm still not having my feed though, as I'm refusing it.
I've had my NG tube since, like the 12th of January 2018.

Can low blood sugars cause encephalitis.
I've also had the neuro virus for the first time on November 2018.

Bloods have been sent but, what if they come out negative…
Don't know how much longer I can cope, too keep fighting for more scans and tests.
My mind is blank and foggy!

I'm now on melatonin instead off zopiclone too see if I can sleep better 😑

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@horselover7216

Hi.
No it was a normal mri. Think they only use contrast with ct (cat scans)

My mood is just getting worse and I'm getting weaker and weaker physically and mentally.
I had a breakdown that has now pushed me back too being unresponsive again.
I keep seeing and hearing stuff still and it's hard!
My NG tube was put back in in the 3rd day without fluids, meds or feed.
I'm still not having my feed though, as I'm refusing it.
I've had my NG tube since, like the 12th of January 2018.

Can low blood sugars cause encephalitis.
I've also had the neuro virus for the first time on November 2018.

Bloods have been sent but, what if they come out negative…
Don't know how much longer I can cope, too keep fighting for more scans and tests.
My mind is blank and foggy!

I'm now on melatonin instead off zopiclone too see if I can sleep better 😑

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@horselover7216 I don’t know what to say. You have an NG tube but no meds or fluids because you refuse them. Low blood sugar doesn’t cause encephalitis but it can harm your brain. You said you had a breakdown and were unresponsive again. Can you tell me what happened to cause this? I know it’s very hard being in hospital for so long. Please try to continue working with the doctors! We want the best for you

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@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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@janyce

Many of these symptoms sound very familiar to me. I have had double vision for two years. Blood tests have been negative for myasthenia Gravis but when I became ill with similar problems this summer I have been diagnosed with mg. I have a new neurologist and am under treatment. I am 81 years old and seldom feel well but I am encouraged.
Please get the doctors to consider treating her for ms! I get IVIG every 4 weeks. I take Celcept and steroids (slowly reducing these).

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Have you been tested for autoimmune encephalitis?

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Did your wife get tested for Autoimmune Encephalitis? Any doctor can draw the bloodwork and have it send to Mayo Rochester lab. If she has a teratoma or a possible herpes virus, it’s a likely culprit. Most doctors are not familiar with it but there is a lot on the internet about it. You probably need to go to a teaching hospital and get a doctor that actually has treated it before, most have not! It can get a lot worse without treatment.

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@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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