Hi everyone I want. I want to alert everyone to a wrong diagnosis of dementia then the lack of urgency to treat a TREATABLE symptom. I posted soon after Christmas about my Brother who seemed to have sudden on set of Dementia ( maybe Vascular) th Post was labelled ‘first my mother now my brother’. Like most on this forum I was bereft with little help from NHS or Doctor referrals. My brother had huge memory problems that suddenly took over his personality but also was having body jolts or quick seizures. He went from a functioning brother with Deja Vue symptoms to a person I could not recognise within weeks. He had virtually a blood test every week for 6 weeks all that was diagnosed was low sodium. Things came to a head during Christmas when he started not only having seizures but imaging things not there. Plus he seemed to have lost touch with reality and couldn’t remember what he had done the previous hour. He had an obsession over medication from 20 years previously and would search the house for none exsistant tablets. On New Year’s Day he woke up with very little connection to ‘now’. It was both frightening and horrendous but everyone had steered me down the Dementia route. I took him to the doctors who ordered more blood test and just about survived for 2 more days before I took him to A&E. I was just so frightened about what he would do to himself, my 92 year old mother (she has Vascular Dementia) who trusted& loved him to bits. he seemed to have forgotten she was disabled. We waited 4 hrs in A& E before being seen. Our GP had sent all the documentation over including a brain scan and 2 months of blood tests. The young doctor who finally saw us briefly scanned the notes and, I would have to say impatiently, listened to the symptoms. He summed up a 3 minute session with ‘its Vascular Dementia’. My worst fears realised at that moment. Then because I just kept saying he was putting my mother in unintential danger my brother was escorted to a Ward. I thought then he would get some treatment or at least be kept safe. I left to go home (30mins max) to get PJs etc. When I got back he had been assessed by the ward consultant ( unknown specialism) and had been discharged to an out patient at the memory clinic,
The next 2 weeks were horrendous he was getting more and more confused, agitated and increasingly losing a sense of reality mixing past experiences together to form his ‘Now’. Earlier referals by the JP to the hospital finally came through for 1st March and the memory clinic for 29th March. A life time away as we were mid January. I phoned both the hospital and The Memory Clinic to no avail. When I described his symptoms I just got told if he was dangerous go to A&E. I had been there and they had sent him home! Finally after prompting by the practice Nurse I tried the hospital Centre again and someone was looking after us. I got such helpful secretaries then admission clerks, though I was in tears and probably not making much sense myself. There had been a cancellation for the next day. I practically bit the hand off down the telephone. The next day I bundled my 92 year old mother, my brother ( who thought we where going to hospital for my mother) in the car 3 hrs before the appointment just to make sure we got there. When we finally saw the Neurologist he listened to me and questioned my brother. Did those same cognitive tests touching noses, etc but also examined his feet? The conclusion was for my brother to have more blood tests and a CT scan. When I asked about the Dementia diagnosis given on Jan 4th his words just echoed “let’s not go down that route yet”. I was in stun did it mean not dementia what was it. My brother gave blood for testing while we where there. It was again chaos that evening with my brother’s agitation and memory loss.
The next morning I recieved a call that the consultant wanted to admit my brother as an emergency admission to the hospital and the bed manager would phone. 5 days down the line we are still waiting for that admission. BUT things got so bad that I again I took him to our local A&E as he was so scary and dillusional with that horrendous memory chaos. The hospital finally admitted him as I refused to let him back home as he was putting my mother in danger. They admitted him over night. The next day when I visited they were getting some more blood test results back. HE HAD NOT GOT DEMENTIA.
A double edged result he has AUTOIMMUNE ENCEPHALITIS that is treatable or manageable though vey, very horrible as a disease. And though it can cause brain injury it can be managed. I know for most forum members the Demtia prognosis is irrefutable but please just don’t let anyone assume fight for that diagnosis so that things aren’t missed. It’s so hard having to fight the NHS for diagnosis (we are still waiting for my mums official label) but they can get it wrong. And in all my dealings you have to shout louder than other people to get somewhere. I am still shouting to try and get my brother off a general ward at the local hospital but I won’t stop ever till we get the right treatment.
Thankyou to everyone on this forum for support. I will still read & keep in touch.
Carole Beech
The next 2 weeks were horrendous he was getting more and more confused, agitated and increasingly losing a sense of reality mixing past experiences together to form his ‘Now’. Earlier referals by the JP to the hospital finally came through for 1st March and the memory clinic for 29th March. A life time away as we were mid January. I phoned both the hospital and The Memory Clinic to no avail. When I described his symptoms I just got told if he was dangerous go to A&E. I had been there and they had sent him home! Finally after prompting by the practice Nurse I tried the hospital Centre again and someone was looking after us. I got such helpful secretaries then admission clerks, though I was in tears and probably not making much sense myself. There had been a cancellation for the next day. I practically bit the hand off down the telephone. The next day I bundled my 92 year old mother, my brother ( who thought we where going to hospital for my mother) in the car 3 hrs before the appointment just to make sure we got there. When we finally saw the Neurologist he listened to me and questioned my brother. Did those same cognitive tests touching noses, etc but also examined his feet? The conclusion was for my brother to have more blood tests and a CT scan. When I asked about the Dementia diagnosis given on Jan 4th his words just echoed “let’s not go down that route yet”. I was in stun did it mean not dementia what was it. My brother gave blood for testing while we where there. It was again chaos that evening with my brother’s agitation and memory loss.
The next morning I recieved a call that the consultant wanted to admit my brother as an emergency admission to the hospital and the bed manager would phone. 5 days down the line we are still waiting for that admission. BUT things got so bad that I again I took him to our local A&E as he was so scary and dillusional with that horrendous memory chaos. The hospital finally admitted him as I refused to let him back home as he was putting my mother in danger. They admitted him over night. The next day when I visited they were getting some more blood test results back. HE HAD NOT GOT DEMENTIA.
A double edged result he has AUTOIMMUNE ENCEPHALITIS that is treatable or manageable though vey, very horrible as a disease. And though it can cause brain injury it can be managed. I know for most forum members the Demtia prognosis is irrefutable but please just don’t let anyone assume fight for that diagnosis so that things aren’t missed. It’s so hard having to fight the NHS for diagnosis (we are still waiting for my mums official label) but they can get it wrong. And in all my dealings you have to shout louder than other people to get somewhere. I am still shouting to try and get my brother off a general ward at the local hospital but I won’t stop ever till we get the right treatment.
Thankyou to everyone on this forum for support. I will still read & keep in touch.
Carole Beech
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