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.

@3les54

Thanks to everyone for the responses. As of yesterday our HMO has drawn in the past 5 weeks 94 vials of blood for testing, CTs/MRIs/xrays/ultrasounds on every part of her anatomy. A large ovarian cyst of a common type was discovered, not related to her current situation, but more importantly Infectious Disease Dept tested her for cytomegalovirus (cmv). She tested positive. A follow up confirmation test was done with results due by Monday or Tuesday. If CMV isn’t the problem, we will go to USC in Los Angeles, or Mayo, for help. Getting to and from the hospital exhausts her.

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Has your wife been tested for autoimmune encephalitis? Sounds like it might be paraneoplastic and I’ve heard many people got AE after a flu shots, but the ovarian cyst is the main cause. Many times autoimmune encephalitis is connected to an ovarian cyst. She should have the autoimmune blood panel and also a lumbar puncture. Her local neurologist an order the blood panel and then send it to Mayo in Rochester for testing. Please speak to a doctor at a hospital that is familiar with this, so many doctors and hospitals are not. Lots of info online. Youtube has lots of information about it. Let us know how she is doing.

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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 the sister referred to by Becky! I also have MPA with rental involvement diagnosed 4 years ago. Do you know what chemo drugs she will have? I took several that stopped the advancement of the kidney disease which is probably their main focus right now. After months of high powered drugs, things settled down to a new normal. Will be happy to discuss off line with you if that will help, Molly

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@molly48823

I’m the sister referred to by Becky! I also have MPA with rental involvement diagnosed 4 years ago. Do you know what chemo drugs she will have? I took several that stopped the advancement of the kidney disease which is probably their main focus right now. After months of high powered drugs, things settled down to a new normal. Will be happy to discuss off line with you if that will help, Molly

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Right now she is being treated with rituxan and steroids. This may change after the kidney biopsy. A major concern right now is the low hemoglobin count. It has improved with transfusions, iron infusions, and the treatment mentioned though.

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@3les54

Right now she is being treated with rituxan and steroids. This may change after the kidney biopsy. A major concern right now is the low hemoglobin count. It has improved with transfusions, iron infusions, and the treatment mentioned though.

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Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

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@molly48823

Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

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Your treatment is the same as that recommended for my diagnosis of AAG. How long have you been on the treatment and what has your experience been? Do you feel better, worse, or about the same? Have there been any complications?

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@molly48823

Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

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This is Leslie…thanks for logging on. I have SO many questions! Are you back to your normal life – energy level – are you in remission.

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@fmgeorge

Your treatment is the same as that recommended for my diagnosis of AAG. How long have you been on the treatment and what has your experience been? Do you feel better, worse, or about the same? Have there been any complications?

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Feeling great, most of the time. This has been going on since Oct 2015, I’m now 73. I have occasional flares which are treated with increases in steroids. No other toxic drugs since the original onset. Rituxan was repeated at the 2 year mark. I have been on steroids for the entire time. Lab work every month and an appt with 1 of 3 specialists every 3 months, more or less.

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If you haven’t already done so, I encourage you to contact the Vasculitis Foundation 816.436.8211 and ask for their MPA brochure. Lots of good info on their website: https://www.vasculitisfoundation.org/

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@3les54

This is Leslie…thanks for logging on. I have SO many questions! Are you back to your normal life – energy level – are you in remission.

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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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@johnbishop

Hello @ljr316, Welcome to Connect. I wasn't familiar with serum sickness and did a search of Connect and found another member had discussed serum sickness in a post. I'm hoping @3les54 will be able to share what they have learned about serum sickness with you. It's good that you are asking questions and learning as much as you can about the condition. Here are a few articles that may be helpful.

NIH – Serum Sickness — https://www.ncbi.nlm.nih.gov/books/NBK538312/

Serum Sickness – causes, symptoms, diagnosis, treatment, pathology

@ljr316 has your doctor suggested any treatments?

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I think I have encephalitis but had a normal mri. Just like susanah, from brain on fire.
Posted this by the way.. This is how I feel
Right now I'm in crisis zone to be honest😭
I have chronic pain everywhere that's getting worse and worse every day and every hour, also including my sickness too.
I can barely type because I don't have the strength and it hurts.
I can't sit up or hold my head and neck up and went from walking too not even being able to sit up etc in a short amount of time..
I have visual and auditory hallucinations that cause me to freak out
I'm moody and sometimes aggressive and uncontrollable and now can't stop swearing
My memory is progressively getting worse and so is my mood and mental health
Frequently crying
Lack off sleep but on zopiclone
No meds working
Incontinent with number 2
Had to have a catheter because I can't go for a wee
Random shaking
Dizzy
Painful eyes and barely have the energy too open them. Painful when shut too
Can't talk properly and forgetting what I say.
Feeling unusually hot, yet normal temperature
Aggitation
Possible seizures
Fainted several times
Lathargic
Loose more and more energy every day
Technically mute or selectively mute. Get angry every time I talk
Uncontrollable anger
Not feeling safe
Feel invisible
Suicidal
No patience
Getting angry at anything and anyone
Sensitive to light
Amplified senses
Tinitus
Paranoia
Neck pain
Unstable in dark when I could walk
Third time I can't walk and every time gets worse
Intense internal itching down below
Severe depression
Anxiety
Rare chromosome deletion called 2q37.3
Autism
Anorexia
Bpd (supposedly)
Ahlos-danlos syndrome
Neorologist did reflex tests and found my reflexes over working because my right leg suddenly started shaking. He thought it was the link between my legs and brain weren't working properly.
Normal mri

I'm at loss with these symptoms and I'm seriously at crisis point as I can't deal anymore. 😭
I thought I had encephalitis, but not looking like it now 😑..

They now think its a mitochondrial problem… Don't think so though 🙁

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Hello @horselover7216, welcome to Connect. I know it must be extremely difficult to deal with all the symptoms you have and not be able to find a diagnosis and treatment. You mentioned being on Zopiclone to help with sleeping. From what I've read some of the symptoms you listed can be caused by Zopiclone if you have other medical conditions. Are you able to discuss possible side effects with your doctor?

Drugs.com – zopiclone
https://www.drugs.com/cons/zopiclone.html

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@johnbishop

Hello @horselover7216, welcome to Connect. I know it must be extremely difficult to deal with all the symptoms you have and not be able to find a diagnosis and treatment. You mentioned being on Zopiclone to help with sleeping. From what I've read some of the symptoms you listed can be caused by Zopiclone if you have other medical conditions. Are you able to discuss possible side effects with your doctor?

Drugs.com – zopiclone
https://www.drugs.com/cons/zopiclone.html

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Hi.
Yes it does frustrate me that I wasn't warned about these symptoms…
Could it be encephalitis though…
Heard some can have normal test results…

Not finished this email but I will send it too you

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