Posted , 9 users are following.
A rough history of my wife’s condition:
Hives on head, back, back of arms and legs. Started suddenly around 6 months ago. Severe itching.
Weight loss from about 125 lbs to 100 lbs over a few months. She said that she had trouble swallowing and had pains in the stomach and intestine areas.
Around the May/June 2017 time she would grab her head sometimes and exclaim “My Memory”. She was apparently having problems with short term memory.
June/July 2017 when my wife would ride in the car with me she would sometimes seem to doze partially off and would make a growling sound. If I would tell her to stop she would sometimes replay: I cannot stop.
On June 28, 2017 and upper endoscopy was performed on my wife with no significant findings. An acid blocker was prescribed for acid reflux which was started right away.
Around June 30, 2017, my wife suddenly develop a sleep disorder where she would groan loudly all night. It quickly got to where she could barely talk when she was awake. I started sleeping in the living room due to the noise.
In early July 2017, the Dermatologist examined and biopsied the Hives and said that it was just Hives and don’t scratch them.
Also in early July I noticed that my wife’s face started looking kind of ‘empty’ and she wasn’t saying much. She also stopped cooking in the evenings and wanted to go out and eat each evening.
On July 13, 2017 I took my wife to her OBGYN who pulled a blood sample to check for Menopause.
On July 16, 2017, she had a fall but was not hurt.
On July 18, 2017 she fell and said that her back and back of head hurt. I took her to the ER where they ran a bunch of blood tests, CT’s, X-Rays. They said that they thought that she had vasculitis due to blood inflammation. They stated that she can fill a prescription for steroids and that should temporarily help and that she should see a Neurologist soon. My wife was acting strange (childish) and demanded to go home. I filled the prescription, started giving the steroids to her until the next day when I found that one of her arms had a major breakout of something (hives?) so I stopped giving her the Steroids.
On July 24, 2017 I took my wife to the OBGYN for her follow up visit to review the blood work. The OBGYN stated that she was in full menopause and she prescribed HRT which I filled right away and began given the HRT to my wife. I showed the OBGYN a full list of the medical symptoms that my wife was experiencing and she stated that they were all most likely due to menopause.
Thinking that it was a bad case of menopause, I struggle with my wife until the evening of July 31, 2017 when I came home and found that she had fell and she complained about much pain and it wasn’t clear how bad she was hurt or whether she was just bruised. I took her to the same ER as above. While she was waiting on the ER bed she was making a ‘pedaling the bicycle’ movement on the bed and groaning. Two doctors walked, watched her for a while and asked if she had sought psychiatric help. That was embarrassing. I am not sure when she started the ‘pedaling the bicycle’ movement. The ER did the normal stuff: blood work, CT’s, X-Rays and released her and said to follow up with you Family Doctor.
I took the next day off and put children furniture bump cushions everywhere that I could think of to try to prevent any further fall injuries.
On the afternoon of August 1, 2017 my wife reported that she had sucked a piece of apple down her windpipe. I took her to a more local ER, checked in and when they asked my wife if she had sucked a piece of apple down her windpipe she said no. I immediately said to assume ‘yes’. They did CT’s, X-Rays, blood work and found nothing. The ER starred at my wife (I think that she may have been ‘pedaling the bicycle’ at the time but I don’t remember.) and said that she is just all stressed-out. He had the nurse give her a strong IV administered sedative and a prescription for Xanax and released her. I managed to get her home, but it was a struggle.
On the afternoon of August 2, 2017 I found that she had hit her forehead on something resulting in a cut which later required 5 stitches. I decided to go to a Minor Emergency and the Doctor there refused to stitch it up since her skull of showing. However, the Minor Emergency Doctor looked at her face from a few feet away and stated that my wife had Serious Neurological problems and that I should return to the Hospital ER and demand to be checked in to see a Neurologist.
I went to the same ER as the day before. At first they resisted and little. However, they setup a video interview with a consultant Neurologist (The city that I live in does not have any Neurologists.). The consultant Neurologist eventually issued orders to be transferred via ambulance to a much larger city which has full Neurological facilities. Of course, my wife was ‘pedaling the bicycle’ most of the time while waiting for the ambulance.
At the Neurological Hospital (beginning 8/3/2017) they interviewed us, did many tests, blood samples, spinal taps, CT’s, MRI’s, etc. They moved my wife to a private room and kept her sedated a lot because of her loud groaning and ‘pedaling the bicycle’ movements.
At around noon on 8/6/2017 I was planning to go back home to check the mail and return that night. The head nurse seemed all concerned about something and she said that they were planning to move my wife to a room which is very close to the nurse’s station for better monitoring. The move was completed by 1 p.m. and that is when I left. I found a message on my phone at around 4 p.m. stating that my wife was having trouble breathing so they rushed her to ICU where they installed a ventilator. At around 5 p.m. I got another message from ICU which seemed ‘stressed’ stating that my wife was in ICU on a ventilator. When I got back to the Hospital at around 9 p.m., I found that my wife’s left lung had a bad case of pneumonia and both lungs had a lot of mucous in them and ICU cleaned all of this stuff out of her lungs. The next day a nurse, which was not involved, told me that her breathing had stopped and that they immediately (?) forced air into her lungs to breathe for her while they rushed her to ICU.
In ICU she looked really messed up. She was sedated, her eyes were rolled back in her head. The Neurologist examined her and stated that she had a major ‘disconnect’ between her brain and her spine. They did a spot EEG which showed slower than normal brain waves.
On the evening of 8/10/2017 they transferred my wife to the Neuro ICU of a nearby Hospital which had continuous EEG monitoring.
I saw the Neurologist exam my wife (partially sedated) upon arrival. She had some reflexes in both legs and her right arm and could move these around some. Her left arm had no reflexes and she could not move her left arm.
The last three days at the first hospital they started giving her the steroids under the assumption that she had Anti-NMDA Receptor Encephalitis. The last two doses were given at the new hospital. The Neurologist claimed that there was no positive response to the steroids.
On 8/20/2017 my wife was taken off sedation and she woke up by noon on 8/21/2017. From that point on she can do limited following with eye movements but she seems to be kind of like a vegetable. On 8/17/2017 they started giving IVIG with the last dose planned on 8/21/2017. No response was reported to the IVIG.
The Neurologists have gotten many of the test results back and appear to be ‘giving u’p on my wife and they want me to put her in a Hospice or Nursing Home. They stated that the tests for Anti-NMDA Receptor Encephalitis came back negative. They are saying that they think that it is probably Creutzfeldt-Jakob disease but the test results do not come back until about a week after they want to release her.
The weekend Neurologist gave me printouts of the ‘Experimental Research Departments for Undiagnosed Diseases’ (NIH, Mayo Clinic, UTSouthwestern Medical Center).
0 likes, 26 replies