Wife Has Serious Neurological Problems - NO Solution
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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).
Very Frustrating!
0 likes, 26 replies
TheKid7
Posted
The long term care hospital did have a brain MRI performed two days ago with nothing remarkable being found. I was arguing that if my wife had CJD, it most likely would be showing up on the MRI by now. I am still trying to get a second opinion from another Neurologist, but I suspect that this won’t happen until I can get Guardianship over my wife (3 to 6 month process)(I have no Medical Power of Attorney.). After the Guardianship process is completed, I can get copies of all of her medical records for a Neurologist to review (If I can find a Neurologist that is willing to review the records.).
I may move my wife back to the city where I live soon (2.5 hour drive from her current location). I will probably put her in a nursing home here (All out-of-pocket pay).
I am seeing an Elder Attorney early next week to go over options and the Guardianship process.
TheKid7
Posted
My wife is still at the long term acute care hospital. Since there has not been enough improvement for my Health Insurance to keep paying for the hospital, she will be soon moved to a Nursing Home.
Beginning around 10/10/2017 to 10/14/2017, she began being awake more and started looking more alert. Also during that time period some of the symptoms of a Major Stroke started disappearing (Previously, both hands doubled over, right elbow fully retracted with right hand up against the chest, left foot = drop foot, right foot = partial drop foot.)(On 10/14/2017 it was noted that both hands are now normal and the right elbow can be partially pulled down. Both feet remain unchanged.) On 10/14/2017 she began physically struggling and trying to mouth words (no speech valve for the Tracheostomy). No significant improvements from 10/14/2017 to present.
In recovery from neurological diseases where there has been significant neuronal damage, what would you expect the recovery process to look like? I realize that everyone is different, but I was wondering what is ‘typical’ and how would you expect the recovery to vary?
Some recent on-going health issues: Every one to three days she has to be given either an enema or suppository due to build-up in the large intestines. After the enema/suppository is administered followed by a bowel movement, there is only some decrease in her abdomen being puffed up. It seems like this started in recent weeks. She has been on a catheter for some time because without being on a catheter her bladder sometimes will sometimes fill up to around 1.5 liters which results in her a very high heart rate and other vital signs being thrown way off.
The attempt to get a Medical second opinion has stopped until I can get her back to my home city and finish the Guardianship Process (I have no Power of Attorney to get the Medical Records.). I figure that in around three months from now I will be able to get a Medical second opinion.
I finally was able to get a copy of my wife’s CSF T-Tau Protein results and the number was quite high: 2,776 (>98% chance of prion disease). It still seems like there should be a steady decline in my wife’s health, if she had CJD. I looked at many web sites to see what other things that can cause this number to be this high. A Major Stroke was one of them. Could an untreated ‘unknown’ Autoimmune Encephalitis produce this much neuronal destruction? What other diseases/conditions can produce this much neuronal destruction?
I remember that one visiting neurologist showed me my wife’s MRI and stated that the fuzziness around the Cerebral Cortex was Brain Damage. Could this fuzziness around the Cerebral Cortex be an indication of enough neuronal destruction to give the high CSF T-Tau Protein Number?
TheKid7
Posted
My wife had a breathing issue a few weeks ago resulting in the doctor putting her on a breathing machine. The doctor has refused to ween her off the breathing machine. He wants to let the pulmonologist at the nursing home to decide on whether or not to try to ween her off of the breathing machine.
There has been an on-going issue over the past many weeks with her not being able to have bowel movements/sufficient bowel movements. Her abdomen has ballooned up to a very large size. Laxatives, enemas, suppositories produce little or no bowel movements. CT with contrast seems to show an impacted bowel.
I have requested to the hospital doctor to transfer her to a full hospital to have a gastroenterologist clean her large intestines out prior to sending her to a nursing home. The doctor has not yet responded to my request.
Other on-going issues: Repeat bladder infections due to continuous use of a foley catheter. Repeat lung infections.
My wife is still in a minimally conscious state. She seems to be a little more responsive over the past week or so. So far the net trend seems to be an improvement in cognition.
TheKid7
Posted
Prior to seeing the above neurologist, I submitted the paperwork for the free CJD Autopsy to be performed after her death.
My wife is now in a ventilator nursing home on a ventilator. Her family is in town to decide on whether or not to put her on Hospice. At first they said yes, but the next day they told me to decide. I plan to make a decision on, or around, January 5.
TrustMeOnThisOn TheKid7
Posted
I'm so sorry this has happened. This has to be painful for the both of you.
TheKid7
Posted
My wife had a reversible Colostomy earlier this week along with a wound VAC for her bed sore wound. So far, she seems to have recovered from the Surgery. She was unable to have proper bowel movements prior to the surgery.
I want to start looking into the possibility of sending my wife 'out of country' for treatment, but I don't know where to send her. I guess that the closest/least expensive place would be Tijuana, Mexico. I currently don't know any recommended Hospitals/Clinics/Doctors there. I would like to make some phone calls to see if anyone there can help her. Does anyone have any suggestions.
I don't know the exact cost of an air ambulance, but I am guessing that it will cost around $40,000 one way from her current location to Tijuana. This may sound like a lot of money, but I don't have long term care insurance. Beginning around mid March 2018, I will have to start paying around $12,000 to $15,000 per month out of pocket for the current ventilator nursing home.
I attempted to get the Hospital where the Colostomy was done to pull a CSF Sample to send off for Total Tau Protein & RT-QUIC with me paying the costs involved, but the Hospital refused with the lame excuse that she is too weak and prone to risks such as infection when the spinal tap is made. My thinking is that if the Total Tau Protein level has decreased substantially from the August 2018 CSF Sample Results, then my wife does not have CJD.
TheKid7
Posted
My wife got an infection which turned out to be sepsis. They partially treated her for the sepsis. However, my wife's sister said that my wife cannot be sent back to the nursing home to suffer more. My wife's sister insisted that I place my wife on Hospice. So I placed my wife on Hospice.
My wife 'passed away' about 2.5 days after being placed on Hospice.
My wife was picked up for the CJD Autopsy the afternoon of the day that she 'passed away'.
My wife was buried a few days later.
I will not know the results of the CJD Autopsy for about 6 to 8 weeks. If my wife is CJD Negative, I can pay $500 for further investigation to try to determine what neurological condition(s) may have existed which led to my wife's health issues.
I saw a study on the web which showed that over a three (3) year period 32% of the people diagnosed with CJD did not have CJD (Autopsy verified).
irinar TheKid7
Posted
TheKid7
Posted
A few weeks ago, the CJD Autopsy came back as "Familial Creutzfeldt-Jakob Disease".
Before they issued the final results, I asked several questions to get a better picture of things. To summarize some of the answers to my questions: Quantity of CJD was 'typical', location of CJD was 'atypical'. Basically, the CJD was located mainly in the center area of the brain (Thalamus, dark gray matter, etc., with a few widely scattered small amounts in the cerebral cortex.).
I specifically asked if a MRI (DWI) was done just prior to her passing away, would the MRI had shown the CJD. They said No. I thought that a typical quantity of CJD would almost always show up on a MRI (DWI).
irinar TheKid7
Posted