Discussions By Condition: I cannot get a diagnosis.

Doctor's are stumped...

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • October 29, 2008
  • 10:21 PM

Hi,

My Uncle (67 years old) was rushed to ER on Friday morning, Oct. 24th, because he was found sleeping on his bed, completely unresponsive and unable to talk. Doctors tested him for a stroke and for any bleeding or swelling in his brain, and all tests came back negative. They also tested him for meningitis, and that came back negative as well, however, doctors explained that meningitis tests can give a false negative reading sometimes, so although it came back negative, they did not rule it out, and put him on several antibiotics. They also performed a spinal tap that night, but again, that showed up as negative for anything. By that night, he started to become a little more responsive, but was still unable to talk and was in a state of confusion. He also had a very high fever (went up to 104 degrees), and doctors had to pack him with ice to try to keep it down. My uncle has been hooked up to machines to get hydrated and fed, and he is also connected to a catheter. The next day, he seemed a bit more responsive and tried to talk to us, but he would get very tired and frustrated when he couldn't speak (his words come out extremely slurred and is very hard to understand). Doctors performed a MRI on him, but gave him more sedatives than usual, because he wouldn't keep still, and because of that, he remained in a deep sleep for nearly 3 days. It seemed like he was trying so hard to wake up, but he just could not. Thankfully, he did get up eventually. While he was in the deep sleep, they kept him in ICU for a few days to monitor his fever as well. He was eventally able to maintain a normal fever on his own. The MRI came out with no signs of anything unusual, and another spinal tap was performed, which also showed no results as well. The doctors are completely stumped, and cannot find out the cause for his conditon.

I am so worried for my uncle, he doesn't look like his normal self and is so weak. This is the first time he's ever been hospitalized like this... he's gone to the doctor regularly to check up, and he has a special doctor for his hand tremors, which he has medication for. It is so frustrating that the doctors cannot find out what is causing him to be this way.

Can anyone please shed some light on what they think this could be??? I hate seeing him suffer like this. My cousins and I were thinking that perhaps telling the doctors to look into Botulism, but we aren't sure. We are all so lost. Today, they will be performing a CT scan on him, as well as another procedure, which was ordered by his neurologist, to insert "something" in his groin area to travel upward and shoot dye to check for abnormal activity in his brain. They will have to sedate him again, and after the last time, I'm so scared that he'll have a hard time waking up again.

Anyway, I'm so sorry for such a long post, but if anyone could please tell me if they have heard of any other such incident like this, I would be most appreciative!

Thank you so much,
Cassy

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8 Replies:

  • Take a carbon monoxide detector to his bedroom and see if it goes off.
    Monsterlove 2921 Replies
    • October 30, 2008
    • 00:09 AM
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  • Hi, Thank you for your replies and for your suggestions.... I will talk to the doctors about those possibilities. My family is now discussing if we will go ahead with the angiogram procedure, there are some risks involved, and we're all very scared about that, but we feel that he is not getting better, and something in his brain is causing him to not speak and not respond to simple commands, such as "stick out your tongue" and "show me two fingers". Sometimes it seems like he's himself, and sometimes he seems as though he is a small child. He is very fixated on touching and feeling peoples hands and arms. He is physically much stronger, and has to be strapped down to the bed because he tries to escape, but his slurred speech and his state of mind really worries us. I'm also thinking that maybe it has something to do with a mix of medications he was taking, I don't know. Prior to his hospitalization, his neurologist had increased the dosage of his medication that he takes for his hand tremors, and maybe his body/brain could not handle that. He has been taken off of that medication since he's been hospitalized... but it just seems like he is not improving, mentally. I just hope he gets better... we all miss him so much... we want him back. :(
    Anonymous 42789 Replies
    • October 30, 2008
    • 07:08 PM
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  • Try to find out more about the symptoms.
    Anonymous 42789 Replies
    • October 30, 2008
    • 08:23 PM
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  • I would not think this to be related to anything cardiovascular in nature. Because of his medical history, I would suggest this is either serotonin syndrome or neuroleptic malignant syndrome, both of which are induced by certain reactions of neuroleptic drugs or serotonin reuptake inhibitors with other drugs. Patients so afflicted typically arrive at the ER department with altered mental status or are unresponsive, have a fever and when brought to the conscious level, are observed to writhe around or demonstrate the uncontrollable urge to fight off attempts to restrain them. They can also demonstrate myoclonic seizures during the acute phase as well. This would be a likely differential diagnosis since the MRI imaging series revealed no lesions which would suggest a hemorrhagic stroke and a vascular enhanced series was likely conducted as well to determine whether a thrombotic stroke was responsible. Best regards, J. Cottle, MD.
    JCottleMD 580 Replies
    • October 30, 2008
    • 11:21 PM
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  • http://en.wikipedia.org/wiki/Neuroleptic_malignant_syndrome
    Monsterlove 2921 Replies
    • October 31, 2008
    • 03:18 AM
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  • I would not think this to be related to anything cardiovascular in nature. Because of his medical history, I would suggest this is either serotonin syndrome or neuroleptic malignant syndrome, both of which are induced by certain reactions of neuroleptic drugs or serotonin reuptake inhibitors with other drugs. Patients so afflicted typically arrive at the ER department with altered mental status or are unresponsive, have a fever and when brought to the conscious level, are observed to writhe around or demonstrate the uncontrollable urge to fight off attempts to restrain them. They can also demonstrate myoclonic seizures during the acute phase as well. This would be a likely differential diagnosis since the MRI imaging series revealed no lesions which would suggest a hemorrhagic stroke and a vascular enhanced series was likely conducted as well to determine whether a thrombotic stroke was responsible. Best regards, J. Cottle, MD. Thank you so much for your response and suggestion. After reading your reply, I really felt that this made the most sense, and I did ask the doctor about this possibility. Unfortunately, he did say that this has already been ruled out. He said that they checked all his medication to see if something like this could have caused his current condition, but after reviewing exactly what kind of medication he was taking, they concluded that it could not be a possibility because the medication he was on was not the type of medication to cause these types of syndromes. At this point, I just don't know what to believe anymore. My uncle still cannot follow simple commands, and he seems to slip in and out of his daze. He does mumble sometimes, saying our names here and there, and tries to get us to unstrap him from the bed... but gets frustrated and even softly swears when we tell him that we cannot unstrap him. The doctor recommends doing a brain angiogram on him, and if no results show up in that procedure, then he said we may have to talk about doing a brain biopsy. I just don't understand how he can go from being normal one day to being in this state the next. It makes no sense, and the doctors still cannot find any diagnosis. We are going to get a second opinion from another neurologist in the same hospital, since a brain angiogram and brain biopsy are such invasive and risky procedures. At this point, all I can do is pray for the best. Thank you so much for all your replies and suggestions.... please feel free to comment more if you think of anything else. I really appreciate all your input. -Trying to stay strong.
    Anonymous 42789 Replies
    • October 31, 2008
    • 07:03 PM
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  • While a vascular CT scan would be of value, I see absolutely no indications for a brain biopsy based upon what you've described. We tend to consider a biopsy in cases where where a rather aggressive degenerative process such as Creutzfeldt-Jakob disease may be present. If this were the case, however, he would not be demonstrating periods or remittance to the effects. His symptoms are also much too acute for consideration of one of the more traditional neurodegenerative diseases such as Alzheimer's or Fronto-temporal dementia. If there are no signs that his symptoms are worsening, then the need to obtain a brain tissue biopsy would be premature in my opinion. Again, however, a vascular CT would certainly be advisable. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • November 2, 2008
    • 00:44 AM
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  • While a vascular CT scan would be of value, I see absolutely no indications for a brain biopsy based upon what you've described. We tend to consider a biopsy in cases where where a rather aggressive degenerative process such as Creutzfeldt-Jakob disease may be present. If this were the case, however, he would not be demonstrating periods or remittance to the effects. His symptoms are also much too acute for consideration of one of the more traditional neurodegenerative diseases such as Alzheimer's or Fronto-temporal dementia. If there are no signs that his symptoms are worsening, then the need to obtain a brain tissue biopsy would be premature in my opinion. Again, however, a vascular CT would certainly be advisable. Best regards, J Cottle, MD Thank you again for your reply... I really appreciate it. My uncle did get a CT Scan, which came back with no unusual findings. Is that the same thing as a Vascular CT Scan that you mentioned? I am not sure if a 'CT Scan' and a 'Vascular CT Scan' are the same or different. Doctor's still do not have a diagnosis for my Uncle's condition. Yesterday, he seemed much more alert and his speech is slowly but surely improving. He is still slurring when trying to say longer sentences, but it is improving, as we can make out what he's saying much better than before. He tries to do simple things like ask for a water bottle and when given to him, he takes the cap off himself and tries to drink from it. The speech therapist gives him ice to suck on, which he does well, but when she gave him a little bit of a thickened liquid, he was able to savore it on his tongue, but coughed when trying to swallow it, so that was that. He is more animated each day, and can distingush who we are and calls us all by our names. He even kisses us hello, and to our surprise, he even started to say 'thank you' now to the doctors and nurses who help him. This is such a big improvement to us, but it's very frustrating that he still does not follow such simple commands like "show me two fingers." When we ask him to do that, he sorta rolls his eyes and sighs like he's disgusted and just doesn't want to do it. He is also getting much much stronger everyday, and continues to try to escape from his bed. He is strapped down most of the day for his own protection, but he has figured out how to take off his hand straps by himself. We also try very hard to get him to go to sleep, because he just doesn't. He stays up all night, and doesn't sleep for more than 2 or 3 hours, which is actually a big improvement from before. Anyway, thank you again Dr. Cottle for your responses. We still have not decided if we will go through with the angiogram that my uncle's doctor talked to us about... we are waiting for a Porphyria test result to get back to us; doctors said there are two parts to that test, one came back negative, but the other has not come back yet. We are also waiting to get the second opinion from the other neurologist as well... he is still going through all my uncle's medical records and history.
    Anonymous 42789 Replies
    • November 3, 2008
    • 07:10 PM
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