Discussions By Condition: I cannot get a diagnosis.

Mystery Critical Illness - Desperate for Help

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Emma_2010
  • June 8, 2010
  • 09:59 AM

My partner is currently in Critical ITU in King's College Hospital in London. He has a mystery illness that no one in England seems to know what's going on. He’s had every test available in England and they all come back clear, which has stumped the doctors. In a man as sick as him, something should come up in a blood test or a scan – but all his tests come back negative.
This is the run up of what happened before he reached ITU:
Tuesday 27th April
Diarrhoea, fever, headache, severe eye pain, chills, light aversion, tiredness, off food, brown phlem/mucus
Wednesday 28th April
Fever, chills, headache, severe eye pain, light aversion, tiredness, off food, brown phlem/mucus, diarrhoea, emotional – which is extremely unusual
Thursday 29th April
Vomitting, tiredness, headache, eye pain, off food, brown phlem/mucus
Friday 30th April
Overall improvement, started eating cereal, headaches but could watch TV, brown phlem/mucus
Saturday 1st May
More improvement, eating more cereal, very sleepy – slept all afternoon and went to bed early too, headaches, brown phlem/mucus
Sunday 2nd May
Woke up and went to the bathroom – fell over on the way back, from then on extreme confusion, I couldn’t wake him properly, his eyes were closed and he just gave me little smiles, kept trying to go back to bed. Phoned paramedics and went to William Harvey Hospital, he was very sensitive to pain and was hallucinating – still extremely confused and was just sleeping.
Monday 3rd May
Still confused, sleeping, staff at hospital found him on the floor during the night, sensitive to pain, vomiting, asleep most of the time
Tuesday 4th May
Improvement, still confused but could talk to me a little more, vomiting, sensitive to pain, short term memory loss. Transferred to Kent and Canterbury Hospital – Neurology.
Wednesday 5th May
More improvement, could understand a little more but still poor memory, restless and agitated, kept getting up to urinate every few minutes, vomiting, had a seizure in the morning, extreme neck pain, halluncinating in the night, sensitive to pain, very wobbly on feet, hiccups
Thursday 6th May
More improvement, still a bit confused, very hyper and talking excitedly and loudly, vomiting, headaches, had seizure in the morning, agitated and restless, hallucinating in the night and a bit during the day too, couldn’t urinate when trying, sensitive to pain, wobbly on feet and when sitting – he was rocking, when doctor tested his reflexes one side was a bit off
Friday 7th May
Definite improvement – far less confused, wobbly on feet, tried reading the newspaper but could only manage large text, vomiting, restless and agitated, had seizure in the morning, smoked roll up cigarette in the evening which caused him to vomit and triggered facial twitching
Saturday 8th May
In the morning he had facial twitching, vomiting and was wobbly on his feet. Went out at 2.30pm and smoked cannabis (he was confused, he thought he wasn’t ill and just needed to sleep and asked a friend to bring him a joint, which the stupid ‘friend’ did). Everything was worse after. He had lockjaw and facial twitching constantly. He told me he was in extreme agony. His leg and foot kept cramping. He kept getting a funny ‘grin’ face. He was struggling to breathe and was turning blue – at which point I ran for a doctor and then I was asked to leave the room.
I went to buy a drink and take a walk and on returning, he had suffered a cardiac arrest and his heart had stopped for 6 minutes. Doctors revived him and he was on his way to Intensive Care. The details of what happened when I was gone have been a bit hazy, but I’m under the impression that he had started off with small seizing (the twitches in his face) which had developed into a full blown seizure and the doctor gave him a shot of diazepam to stop the seizure, but it only got worse. He stopped breathing, which stopped oxygen flow to his heart, which caused it to stop.
The first week he was in ITU, he was sedated because he had the tube in his mouth from the respirator, and when they lowered the sedation, he was just not responding in the way doctors wanted him too – so he wasn’t opening his eyes or squeezing their hands. His kidneys failed too and he was on dialysis for about 10 days. On the Thursday (13th May) I thought he was responding to me. I was trying to show him photos of our baby and it took about 2 minutes but he did open his eyes and was trying to look at the photos. He was also trying to squeeze my hand. The doctors were going to let me be present on the next sedation hold the following day, but unfortunately he took a bad turn and started seizing.
The seizures turned into constant seizures over the next 2 days and the doctors had him on ridiculous amounts of sedation to try and halt them, but it didn’t work and they were getting very worried. On the Sunday (16th May) the doctors put him on Thiopentone – which did the trick and knocked him out completely. Unfortunately he’s not been able to come off the Thiopentone yet because every time they take him off he’s still having constant seizures.
He was transferred to King’s College Hospital in London on Thursday 27th May.
At this point in time, the doctors at King’s College Hospital don’t know what’s wrong, they don’t know why he’s seizing and they don’t know how to stop the seizures. They keep saying there’s a high possibility he won’t make it.
If anyone can maybe relate to our story or offer any clues – it would be appreciated. He’s a mystery here in England and we’re desperate for help.

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11 Replies:

  • My partner is currently in Critical ITU in King's College Hospital in London. He has a mystery illness that no one in England seems to know what's going on. He’s had every test available in England and they all come back clear, which has stumped the doctors. In a man as sick as him, something should come up in a blood test or a scan – but all his tests come back negative.This is the run up of what happened before he reached ITU:Tuesday 27th AprilDiarrhoea, fever, headache, severe eye pain, chills, light aversion, tiredness, off food, brown phlem/mucusWednesday 28th AprilFever, chills, headache, severe eye pain, light aversion, tiredness, off food, brown phlem/mucus, diarrhoea, emotional – which is extremely unusualThursday 29th AprilVomitting, tiredness, headache, eye pain, off food, brown phlem/mucusFriday 30th AprilOverall improvement, started eating cereal, headaches but could watch TV, brown phlem/mucusSaturday 1st MayMore improvement, eating more cereal, very sleepy – slept all afternoon and went to bed early too, headaches, brown phlem/mucusSunday 2nd MayWoke up and went to the bathroom – fell over on the way back, from then on extreme confusion, I couldn’t wake him properly, his eyes were closed and he just gave me little smiles, kept trying to go back to bed. Phoned paramedics and went to William Harvey Hospital, he was very sensitive to pain and was hallucinating – still extremely confused and was just sleeping.Monday 3rd MayStill confused, sleeping, staff at hospital found him on the floor during the night, sensitive to pain, vomiting, asleep most of the timeTuesday 4th MayImprovement, still confused but could talk to me a little more, vomiting, sensitive to pain, short term memory loss. Transferred to Kent and Canterbury Hospital – Neurology.Wednesday 5th MayMore improvement, could understand a little more but still poor memory, restless and agitated, kept getting up to urinate every few minutes, vomiting, had a seizure in the morning, extreme neck pain, halluncinating in the night, sensitive to pain, very wobbly on feet, hiccupsThursday 6th MayMore improvement, still a bit confused, very hyper and talking excitedly and loudly, vomiting, headaches, had seizure in the morning, agitated and restless, hallucinating in the night and a bit during the day too, couldn’t urinate when trying, sensitive to pain, wobbly on feet and when sitting – he was rocking, when doctor tested his reflexes one side was a bit offFriday 7th MayDefinite improvement – far less confused, wobbly on feet, tried reading the newspaper but could only manage large text, vomiting, restless and agitated, had seizure in the morning, smoked roll up cigarette in the evening which caused him to vomit and triggered facial twitchingSaturday 8th MayIn the morning he had facial twitching, vomiting and was wobbly on his feet. Went out at 2.30pm and smoked cannabis (he was confused, he thought he wasn’t ill and just needed to sleep and asked a friend to bring him a joint, which the stupid ‘friend’ did). Everything was worse after. He had lockjaw and facial twitching constantly. He told me he was in extreme agony. His leg and foot kept cramping. He kept getting a funny ‘grin’ face. He was struggling to breathe and was turning blue – at which point I ran for a doctor and then I was asked to leave the room.I went to buy a drink and take a walk and on returning, he had suffered a cardiac arrest and his heart had stopped for 6 minutes. Doctors revived him and he was on his way to Intensive Care. The details of what happened when I was gone have been a bit hazy, but I’m under the impression that he had started off with small seizing (the twitches in his face) which had developed into a full blown seizure and the doctor gave him a shot of diazepam to stop the seizure, but it only got worse. He stopped breathing, which stopped oxygen flow to his heart, which caused it to stop.The first week he was in ITU, he was sedated because he had the tube in his mouth from the respirator, and when they lowered the sedation, he was just not responding in the way doctors wanted him too – so he wasn’t opening his eyes or squeezing their hands. His kidneys failed too and he was on dialysis for about 10 days. On the Thursday (13th May) I thought he was responding to me. I was trying to show him photos of our baby and it took about 2 minutes but he did open his eyes and was trying to look at the photos. He was also trying to squeeze my hand. The doctors were going to let me be present on the next sedation hold the following day, but unfortunately he took a bad turn and started seizing. The seizures turned into constant seizures over the next 2 days and the doctors had him on ridiculous amounts of sedation to try and halt them, but it didn’t work and they were getting very worried. On the Sunday (16th May) the doctors put him on Thiopentone – which did the trick and knocked him out completely. Unfortunately he’s not been able to come off the Thiopentone yet because every time they take him off he’s still having constant seizures.He was transferred to King’s College Hospital in London on Thursday 27th May.At this point in time, the doctors at King’s College Hospital don’t know what’s wrong, they don’t know why he’s seizing and they don’t know how to stop the seizures. They keep saying there’s a high possibility he won’t make it.If anyone can maybe relate to our story or offer any clues – it would be appreciated. He’s a mystery here in England and we’re desperate for help. Sounds like you are leaving out some details. When and how did this all start?? Was it from drug use or something like that??
    ecko23 51 Replies Flag this Response
  • Sounds like you are leaving out some details. When and how did this all start?? Was it from drug use or something like that?? We have no idea how it all started. He just had flu symptoms from the Tuesday (27th April) and then on the Sunday I couldn’t wake him up. He is a cannabis smoker but the toxicologists said he had really low levels in his system and the neurologists believe that cannabis couldn’t have caused this.
    Emma_2010 3 Replies Flag this Response
  • We have no idea how it all started. He just had flu symptoms from the Tuesday (27th April) and then on the Sunday I couldn’t wake him up. He is a cannabis smoker but the toxicologists said he had really low levels in his system and the neurologists believe that cannabis couldn’t have caused this. The reason I asked is cause drugs can do some weird things to some people, I have been one of those victims and my neurologist is wondering if I have damaged my autonomic nervous system. some people with this condition have sensitivitys to drugs,tranquilizers,and narcotics,wich makes the stmptoms and conditions even worse. Maybe the drs pumping all these drugs into him are making it worse. I have felt like I was gonna have a seizure at times but I never did I dont think.Here read my post. http://forums.wrongdiagnosis.com/showthread.php?t=73111
    ecko23 51 Replies Flag this Response
  • The reason I asked is cause drugs can do some weird things to some people, I have been one of those victims and my neurologist is wondering if I have damaged my autonomic nervous system. some people with this condition have sensitivitys to drugs,tranquilizers,and narcotics,wich makes the stmptoms and conditions even worse. Maybe the drs pumping all these drugs into him are making it worse. I have felt like I was gonna have a seizure at times but I never did I dont think.Here read my post.http://forums.wrongdiagnosis.com/showthread.php?t=73111 So how would they know if he has damaged his autonomic nervous system? And how would we know if the drugs are making it worse?
    Emma_2010 3 Replies Flag this Response
  • So how would they know if he has damaged his autonomic nervous system? And how would we know if the drugs are making it worse? Well it sounds like to me when they are giving him tranquilisers it is making his symptoms worse. You also said when he smoked cannabis it would make him worse. There are some tests to do to see. Google autonomic dysfunction..
    ecko23 51 Replies Flag this Response
  • Hi, Im sorry to hear what is happening to your partner, Im no doctor but it sounds like some kind of meningititis with the headache, neck pain, seizures and the light sensitivity.. eye pain, fever and altered mental state. Many years ago I was visiting a friend when her daughter who had a fever, headache, neck pain and some eye pain, suddenly collapsed and passed out and then wasnt very incoherant when she came around (sleepy, falling asleep, rambling a little, she really wasnt with it). On her being rushed to hospital, it turned out to be meningitis. Have they ruled that out? (I guess they would of done??) http://en.wikipedia.org/wiki/Meningitis
    taniaaust1 2267 Replies Flag this Response
  • Hi, Im sorry to hear what is happening to your partner, Im no doctor but it sounds like some kind of meningititis with the headache, neck pain, seizures and the light sensitivity.. eye pain, fever and altered mental state. Many years ago I was visiting a friend when her daughter who had a fever, headache, neck pain and some eye pain, suddenly collapsed and passed out and then wasnt very incoherant when she came around (sleepy, falling asleep, rambling a little, she really wasnt with it). On her being rushed to hospital, it turned out to be meningitis. Have they ruled that out? (I guess they would of done??) http://en.wikipedia.org/wiki/Meningitis Hello, thank you for your time- yes they ruled out meningitis. He had a couple of lumber punctures that it out.
    Emma_2010 3 Replies Flag this Response
  • I dont like to ask this but IF the worst comes to worst.. can you please come back to the board when he's autopsied and tell his what his issue was. It could save another if another came here with same situation. I really hope they work out what is wrong before it's too late.. best wishes to you both.
    taniaaust1 2267 Replies Flag this Response
  • Probably not the following at all but i thought I'd put the suggestion here just as case. In the past when i was searching for Addison's info, I came across a few online who had had up to 3 times in which they were hospitalized and almost died with this before they got a diagnoses of it. Doctors never tested for it. "Addisonian crisis can be fatal. It is a medical emergency, usually requiring hospitalization. Characteristic symptoms are:Sudden penetrating pain in the legs, lower back or abdomenSevere vomiting and diarrhea, resulting in dehydrationLow blood pressureSyncope (loss of consciousness)HypoglycemiaConfusion, psychosis, slurred speechSevere lethargyHypercalcaemiaConvulsionsFever "i know there is other symptoms of Addison's (i dont know thou if all his symptoms may present?) ... those with Addison's all present differently with the Addisons symptoms but all the ones ive spoken to with it have said they get the vomiting and diarhea when they have Addison's crisis. so i suggest to make sure they have tested his cortisol level.
    taniaaust1 2267 Replies Flag this Response
  • Many of his symptoms are that of Lyme Disease. Check ILADS website.Best of luck and don't give up!
    Anonymous 42789 Replies Flag this Response
  • has he ever had a tetanus shot, if so, how recently? This could be extremely important.
    gregtfish 67 Replies Flag this Response
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