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
rachel13481 TheKid7
Posted
I am so sorry to hear how sick your wife is. Did they test her for Lyme disease? Was her MRI and lumbar puncture normal? If they tested her for Anti-NMDA, they must be suspecting something called paraneoplastic syndrome. There are many antibodies that cause this, not just Anti-NMDA. I would recommend going to the Mayo Clinic. They would be the most qualified to handle paraneoplastic syndrome or any other condition your wife might have. She is fortunate to have you as her medical advocate!
TheKid7 rachel13481
Posted
Did they test her for Lyme disease? Yes. I believe so.
Was her MRI and lumbar puncture normal? Yes.
If they tested her for Anti-NMDA, they must be suspecting something called paraneoplastic syndrome. Yes.
I would apply for all of those ‘Experimental Research Departments for Undiagnosed Diseases’ (NIH, Mayo Clinic, UTSouthwestern Medical Center), but it is my understanding that it takes several months for a response and she may not get accepted.
The problem that caught me off guard is that I have no Long Term Care Insurance. I make too much money to get public assistance, but not enough money to live a decent life while paying for a Nursing Home/Hospice Care. I can financially last for a couple of years or so.
rachel13481 TheKid7
Posted
I would still encourage you to get your wife into one of the recommended places. Paraneoplastic syndrome often occurs because the immune system is responding incorrectly to cancer in the body. I don't mention that to scare you... just that I would assume the specialist hospitals are aware of that and would have a sense of urgency to get you in faster. It is such a rare condition that they may be more interested in her case than you realize.
Also, I don't think you mentioned that she was screened for any cancer. Specifically, the bicycle riding behavior is characteristic of the anit-NMDA which can be associated with ovarian cancer if I remember correctly.
I hope some of my comments help. Neurological science is very frustrating and very slow to get medical help. I understand about the long term care problem. I am still trying to figure that out myself. A person can be in need of 24 hour care but the insurance won't offer it. But if you lose your job, and hence insurance, by taking care of your loved one yourself, you then have no insurance at all!
fely63 TheKid7
Posted
I do not want to scare you but thought since she was in the hands of a Neurologist that you might ask them to test for ALS to rule out everything.
Good luck,
Fely63
TheKid7
Posted
Yesterday afternoon I saw the EEG technician checking my wife's brain waves. About a week ago I asked the head neurologist how do you tell if brain waves are 'slow'?
8/sec = Normal
Her readings last week:
6.5 - 7/sec (mostly 6.5/sec)
Today:
About 5/sec
The amplitude of many of the brain waves also seem lower than last week.
NOT a Good Sign.
A visitor yesterday morning said that the Doctor stated that my wife could Die at any moment. He didn't tell me that.
fely63 TheKid7
Posted
It's not an EEG for ALS it would be an EMG and an MRI of the Spine. You have to ask them specifically for ALS testing. You have to rule that out.
TheKid7
Posted
Is it possible to have Creutzfeldt-Jakob disease and NOT see sudden, jerky movements? The Neurologists have mentioned several times that my wife's problem could be Creutzfeldt-Jakob disease. The results from the sample(s) that they sent out will not be back for about two more weeks from now.
I saw my wife do one (1) massive jerk about a month ago. She was in the passenger seat of our car dozed off and groaning some. I heard a loud bang and out of the corner of my eye I could see that she had kicked the bottom of the car's dash with her shin. She never woke up when she kicked the dash.
TheKid7
Posted
The Doctors called for a meeting tomorrow to discuss the "Path Forward" with the Treatment of my Wife. I suspect that this means that they do not know what is wrong with my wife and have no medical solution. They hinted before that I may eventually have to put my wife in a nursing home. I will find out tomorrow.
fely63 TheKid7
Posted
Good luck. That happened to my sister in law and it was ALS however; if they didn't test for it they won't know.
God Bless. This is so awful for you at such a young age.
I'll keep you in my prayers! 😇
rachel13481 TheKid7
Posted
Hope you have a "good" meeting tomorrow. I don't know the right words, but wishing you and your wife the best, Rachel
TheKid7
Posted
It is noted that sometime after 8/10/2017 both of my wife’s hands and her right elbow started to develop ‘abnormal posturing’. Some Neurologists were jumping to conclusions when they say this and made statements like ‘she has a maximum of three months to live’, based on the development of 'abnormal posturing'. My wife’s left foot developed ‘drop foot’.
It is noted that 5 days of steroids where administered to my wife starting around 8/8/2017. Around a week or so later IVIG was administered to my wife for 5 days. The Neurologist said that neither of these treatments were effective.
My wife’s sister arrived on 8/27/2017 to stay with my wife 24/7. On around 8/29/2017 my wife started improving. My wife had better ‘eye following’ and she began to move both legs.
On 8/29/2017 these pulled a CSF sample to send out for CJD. The previous hospital was supposed to send out this sample but it was found that they never sent the sample. On 8/30/2017 her ability to move both legs improved.
When the head Neurologist saw that she was improving, she said that ‘if’ the CSF CJD test came back negative, she would treat her with rituximab. She would treat her with rituximab, even if all of the tests came back negative. She would assume that my wife has an unknown autoimmune disease.
On 8/30/2017 my wife was transferred to a nearby Nursing Home while waiting for the results of the remaining medical tests.
My wife’s sister is reporting a ‘daily’ clear, slow, improvement in my wife's overall health.
I ordered my wife a pair of ‘stroke’ gloves to help keep her hands and fingers in a more normal position. They should arrive sometime early next week.
This weekend, I plan to setup a good quality MP3 player and Speakers to allow her to hear her favorite music which she will find to be peaceful and relaxing.
fely63 TheKid7
Posted
Listen, know you don't want to hear this, but I too have an auto immune disease which is not curable but is maintainsble. My question to you is has your wife slurred her words or tripped? I'm asking you to please have that damn Neurologist test for ALS. They normally don't catch it until late in the stage and although unfortunately it's incurable, you both know where you stand.
Good luck again kid!
TheKid7
Posted
On the afternoon of 9/7/2017 I received a call from the Nursing Home saying that they were going to send my wife back to the Hospital Emergency Room because of irregular breathing. When I got to the ER my wife really looked bad and was breathing in a strange irregular gasping way. Her eyes were fully open and stationary. They checked her into the hospital acute care section. For about a couple of days my wife did not open her eyes and did not respond at all to voice commands. Finally she started to open her eyes, at first with no tracking. Later she started tracking.
The Hospital said that the cause of a large amount of mucus production in her lungs was reflux of the food being sent directly to her stomach. They said that her lungs were badly infected and they started giving her antibiotics. They temporarily stopped the food feed to the stomach until the lungs cleared up. They restarted the food a day later.
I insisted that they keep her in the Hospital but they refused saying that my Medical Insurance would only pay to have her stay in a Nursing Home while awaiting lab tests.
So they plan to ship her back to the Nursing Home again soon.
I received a report that on 9/11/2017 my wife was able to move her legs again.
One strange thing about this incident is that her tachycardia condition, which has been near continuous for well over a month, has decreased substantially. Prior to this her heart rate was around 120 to 140. Now it is around 90 to 100.
staynpositive TheKid7
Posted
Hi. I just wanted to send out my heartfelt sympathy on all you and your wife have been through. What a nightmare!! To have gone so long without proper medical support and testing is horrible but unfortunately not surprising. ER's just aren't adequately prepared to handle neuro issues unless there's a clearly identifiable reason such as a stroke or tumor. Even small town neurologists (in my experience) don't have the ability to identify rare diseases.
?I realize it's been a month since your post so am assuming the questions you had have been answered. CJD is an awful disease and I'm just so sorry for your experience.
xx H
TheKid7
Posted
My wife seems to have been slowly improving over the past days/weeks.
I was looking forward to them finally treating my wife with rituximab. They said something this morning about getting ready and making sure that my wife is strong enough.
However, this evening I received a call from the head Neurologist that she had just received the CSF CJD test results. She concluded that based only on both the CSF 14-3-3 protein and the CSF Tau protein levels that my wife had CJD. She acknowledged that my wife's MRI's and EEG's had NO sign of CJD.
I mentioned to the head Neurologist that one of the other Neurologist's showed me that my wife's MRI's showed noticeable brain damage around the cerebral cortex. He said to note the fuzziness around the edge of the cerebral cortex.
It seems that cerebral cortex damage could elevate both the 14-3-3 protein and Tau protein levels. Does anyone have any information on how much the 14-3-3 protein and Tau protein levels could be affected by cerebral cortex damage.
It is my understanding that CJD does not show up as fuzziness at the cerebral cortex. This fuzziness could have been caused by an unknown autoimmune encephalitis and or oxygen deprevation (There was a chance of oxygen deprivation on 8/6/2017.).
Some abnormal posturing started showing up around mid-August but seem to stop getting worse about a week later. I was thinking that this could have resulted from an unknown Autoimmune encephalitis.
I feel 'Helpless'!
The head Neurologist has already made up her mind that my wife has CJD based ONLY on the analyses of the CSF fluid.
staynpositive TheKid7
Posted
I think you're on to something with the possibility of a different disease process at play. It, at the very least, deserves to be investigated. Encephalitis CAN mimic CJD. Here's one link although there are many other articles:
http://www.sciencedirect.com/science/article/pii/S0165572816300480
?It doesn't surprise me that the neurologist feels confident in his/her diagnosis and isn't willing to look further unfortunately. It may be helpful to access your hospitals patient advocacy service. If they don't have one available there are other resources. The NIH, National Institute of Neurological Disorders, can be a resource as well. Your questions and concerns are valid and the opportunity to seek whatever testing is available should be granted.
?I read someone else mention paraneoplastic neurological syndrome. I'd imagine a panel has been completed to check for autoantibodies but it's important to keep in mind that 1/3 of patients are seronegative. Requesting a PET scan would be reasonable given the severity of your wife's illness if you felt it was worthwhile.
?So sorry you're going through this .. keep reaching out, for information AND support. I know you feel helpless but you're doing a remarkable job trying to find answers and make sure your wife is getting the best care available to her.