My husband is a 42yr old policeman, he has always been fit and well and kept himself in good shape. He has rarely missed a day from work and loves his job dearly. He has over the past few years started to become a little more forgetful. At first we put it down to normal aging however over the last two years or so his memory has declined to such a degree that I became that concerned that we visited the family GP who referred him to see a Neurologist.
The neurologist saw my husband in September 2013 and after assessment referred him for further testing.
MRI scans on the 27th September 2013.
Neurophysiology on the 4th October 2013 for nerve conduction testing.
Blood testing.
The neurologist then saw him again on the where he referred him for a formal memory test, (addenbrookes) my husband scored 77/100 on this test which I am told is low, In March 2014 we attended another appointment with The neurologist where he told me he suspected this could be the early onset of Dementia, and issued a letter to our Gp stating it looked like pin pointing to organic memory difficulty. as result of this latest diagnosis The neurologist referred my husband for Cognitive assessment which myself and my husband attended in May 2014. my husband underwent two sessions of Neuropsychological testing.
I was told I was not allowed to be present during these tests but I did take and collect my husband after each session, and he was happy and positive about the sessions stating he gave it his all, and tried to the best of his ability although he could not really remember much about the testing by the time we had returned home. We were then called by the hospital who said they needed to see him for another test as some of the testing he had already done needed further investigation. He re attended in June for the further test. And in of July we attended a feedback session with the doctor who told us both that his scores were low and he had seemed a little distracted at times during the testing and that may have contributed to the low scoring. She said she was going to refer him to the Neuropsychiatry team which was based in the same building and we were to expect a letter through the post.
My husband contests that he was not distracted through out the testing and asked why if he had been distracted this was not raised during the test and again after each test with myself, we also wondered why the test was allowed to continue if my husband was distracted and why we were never told at which point or which test he appeared distracted. We also wondered why it affected the scoring for the whole 3 sessions and was not isolated to a particular time or session which he could have re-sat to help in the scoring and diagnosis of him. We both feel that the doctors feedback of “Mr xxxx fluctuating effort in the test situation restricting him from working to the best of his ability” was a cover all sentence and extremely none specific or helpful and went on to state “distractibility” as a factor in the low results.
My husband was there due to his poor memory and concentration; I would have thought this would have been taken in to consideration when testing someone with his presenting illness. The doctor even mentions this in her report on her Key background details “Attention Poorer, difficulties with multi tasking and instances of forgetting and being confused” and this information the doctor had prior to any testing taking place.
In August 2014, as he has been slowly getting worse I phones the hospital to try and see what was happening with the referral the doctor had made, The neurologist secretary knew nothing of the referral and told me The neurologist would not be able to see my husband until the new year as he was fully booked, she did however tell me he ran a private clinic. Due to the time waiting since we had seen The neurologist, we Paid for a private session at the Nuffield to see the Dr.
During this private consultation The neurologist again told me he thought my husband had Dementia or possibly Alzheimer’s and was going to order a Ct scan and refer him to a memory clinic, when I asked The neurologist why it had taken so long to diagnose my husband he stated that had he have been 60 he would have diagnosed him with Dementia six months ago but as he was early 40s he wanted to make doubly sure. My husband told The neurologist he felt different and wanted to start medication to aid with the dizziness and to slow any possible illness down, The neurologist said he would put a network of support in place and once my husband went to the memory clinic he would be offered the correct medication, but as it stood, until the Dr knew exactly what sort of Dementia he was unable to offer any medication.
The neurologist then wrote to our family Gp in August 2014, stating it was likely that we were dealing with a Dementing illness likely to be Alzheimer’s, and stated he would review my husbands Psychometric testing and consider referral to a memory clinic. The neurologist told me that he should no longer be working and should definitely not be driving anymore.
My husbands work and occupational health now asked him to go off work sick as they deem him a risk to the force, due to his memory deficit and confusion.
A week later in August The neurologist again wrote to the family Gp stating he had now looked at psychometeric report from the 11th JULY and noted she had referred him to the Neuropsychiatry team and in his opinion this referral would be very useful and will cast some doubt on the diagnosis of a dementing illness, and this assessment would look for other possibilities other than organic dementing illness before he referred my husband to a memory clinic.
During September as we had still not received a referral letter which the doctor had told us to expect back in JULY 2014, Through out the day I must have made 10 phone calls back and forth between Neuropsychiatry team and the original doctor who referred him., at the end of September we finally attended neuropsychiatry appointment and the doctor there told me that they wanted my husband to have more blood tests and an EEG test. And stressed these were not a diagnostic test but rather an elimination test for Encephalitis. And gave a working diagnosis on the paperwork as cognitive deficits secondary to dementia/early onset Alzheimer’s type.
In October 2014 he had the EEG. The conclusion showed mostly normal activity but did show.
2 isolated minor transient episodes apparent over the left temporal region.
Following cessation of the 2nd period of HV a couple of minor transient episodes are noted independently over the right and left temporal region,
Diagnostically None specific and stated this could have arisen from Cerebrovascular ischaemia. Also stated neither Alzheimer’s disease nor Lewy body dementia can be excluded at this stage.
In November we re attended neuropsychiatry, the doctor told us both of the EEG report and that neither Alzheimer’s disease nor Lewy body dementia can be excluded at this stage. she also emphasized that the referral to herself was to exclude other possible causes of his ongoing illness. She stated she was now going to refer him to the Memory clinic and my husband told her of his frustration at not being given medication, she stated he was near the end of the testing stage and she was going to refer him to the memory clinic,
We also informed her today that at night he now sees shadows and faces in mirrors which are not his own. The doctor explained the perceptual distortions may be connected to his ongoing processes in the brain.
our family Gp signed my husband unfit for work again, using “Dementia” as the reason.
Also in November we attended Neurology at the hospital and spoke with a new doctor who was working along side our Neurologist, we had never seen this one before though, He told us he did not know what was wrong with my husband, but he did not suspect dementia, as the EEG came back normal and was a positive sign.even thoguh i pointed out the eeg report and the fact my husband was dizzy all the time now, and i asked if the two could be related, ie poor blood flow to the brain, but he dismissed this straigh away saying it was not connecte.
He also told us that my husband could return to work and start driving again. I had to ask him several times if he was sure as i couldnt believe what i was hearing. He said yes he was sure. I told him this was contradictory to everything The neurologist and doctor at neuropsychiatry had ever told us. The new Neurologist told me that he would send my husband for some blood tests, another MRI and a memory test, everything my husband had done previously.
so we are back at square one, and my husband is slowley getting worse, i dont even recognise him sometimes now... and NO ONE will help us, and i dont know what to do for the best.
The neurologist saw my husband in September 2013 and after assessment referred him for further testing.
MRI scans on the 27th September 2013.
Neurophysiology on the 4th October 2013 for nerve conduction testing.
Blood testing.
The neurologist then saw him again on the where he referred him for a formal memory test, (addenbrookes) my husband scored 77/100 on this test which I am told is low, In March 2014 we attended another appointment with The neurologist where he told me he suspected this could be the early onset of Dementia, and issued a letter to our Gp stating it looked like pin pointing to organic memory difficulty. as result of this latest diagnosis The neurologist referred my husband for Cognitive assessment which myself and my husband attended in May 2014. my husband underwent two sessions of Neuropsychological testing.
I was told I was not allowed to be present during these tests but I did take and collect my husband after each session, and he was happy and positive about the sessions stating he gave it his all, and tried to the best of his ability although he could not really remember much about the testing by the time we had returned home. We were then called by the hospital who said they needed to see him for another test as some of the testing he had already done needed further investigation. He re attended in June for the further test. And in of July we attended a feedback session with the doctor who told us both that his scores were low and he had seemed a little distracted at times during the testing and that may have contributed to the low scoring. She said she was going to refer him to the Neuropsychiatry team which was based in the same building and we were to expect a letter through the post.
My husband contests that he was not distracted through out the testing and asked why if he had been distracted this was not raised during the test and again after each test with myself, we also wondered why the test was allowed to continue if my husband was distracted and why we were never told at which point or which test he appeared distracted. We also wondered why it affected the scoring for the whole 3 sessions and was not isolated to a particular time or session which he could have re-sat to help in the scoring and diagnosis of him. We both feel that the doctors feedback of “Mr xxxx fluctuating effort in the test situation restricting him from working to the best of his ability” was a cover all sentence and extremely none specific or helpful and went on to state “distractibility” as a factor in the low results.
My husband was there due to his poor memory and concentration; I would have thought this would have been taken in to consideration when testing someone with his presenting illness. The doctor even mentions this in her report on her Key background details “Attention Poorer, difficulties with multi tasking and instances of forgetting and being confused” and this information the doctor had prior to any testing taking place.
In August 2014, as he has been slowly getting worse I phones the hospital to try and see what was happening with the referral the doctor had made, The neurologist secretary knew nothing of the referral and told me The neurologist would not be able to see my husband until the new year as he was fully booked, she did however tell me he ran a private clinic. Due to the time waiting since we had seen The neurologist, we Paid for a private session at the Nuffield to see the Dr.
During this private consultation The neurologist again told me he thought my husband had Dementia or possibly Alzheimer’s and was going to order a Ct scan and refer him to a memory clinic, when I asked The neurologist why it had taken so long to diagnose my husband he stated that had he have been 60 he would have diagnosed him with Dementia six months ago but as he was early 40s he wanted to make doubly sure. My husband told The neurologist he felt different and wanted to start medication to aid with the dizziness and to slow any possible illness down, The neurologist said he would put a network of support in place and once my husband went to the memory clinic he would be offered the correct medication, but as it stood, until the Dr knew exactly what sort of Dementia he was unable to offer any medication.
The neurologist then wrote to our family Gp in August 2014, stating it was likely that we were dealing with a Dementing illness likely to be Alzheimer’s, and stated he would review my husbands Psychometric testing and consider referral to a memory clinic. The neurologist told me that he should no longer be working and should definitely not be driving anymore.
My husbands work and occupational health now asked him to go off work sick as they deem him a risk to the force, due to his memory deficit and confusion.
A week later in August The neurologist again wrote to the family Gp stating he had now looked at psychometeric report from the 11th JULY and noted she had referred him to the Neuropsychiatry team and in his opinion this referral would be very useful and will cast some doubt on the diagnosis of a dementing illness, and this assessment would look for other possibilities other than organic dementing illness before he referred my husband to a memory clinic.
During September as we had still not received a referral letter which the doctor had told us to expect back in JULY 2014, Through out the day I must have made 10 phone calls back and forth between Neuropsychiatry team and the original doctor who referred him., at the end of September we finally attended neuropsychiatry appointment and the doctor there told me that they wanted my husband to have more blood tests and an EEG test. And stressed these were not a diagnostic test but rather an elimination test for Encephalitis. And gave a working diagnosis on the paperwork as cognitive deficits secondary to dementia/early onset Alzheimer’s type.
In October 2014 he had the EEG. The conclusion showed mostly normal activity but did show.
2 isolated minor transient episodes apparent over the left temporal region.
Following cessation of the 2nd period of HV a couple of minor transient episodes are noted independently over the right and left temporal region,
Diagnostically None specific and stated this could have arisen from Cerebrovascular ischaemia. Also stated neither Alzheimer’s disease nor Lewy body dementia can be excluded at this stage.
In November we re attended neuropsychiatry, the doctor told us both of the EEG report and that neither Alzheimer’s disease nor Lewy body dementia can be excluded at this stage. she also emphasized that the referral to herself was to exclude other possible causes of his ongoing illness. She stated she was now going to refer him to the Memory clinic and my husband told her of his frustration at not being given medication, she stated he was near the end of the testing stage and she was going to refer him to the memory clinic,
We also informed her today that at night he now sees shadows and faces in mirrors which are not his own. The doctor explained the perceptual distortions may be connected to his ongoing processes in the brain.
our family Gp signed my husband unfit for work again, using “Dementia” as the reason.
Also in November we attended Neurology at the hospital and spoke with a new doctor who was working along side our Neurologist, we had never seen this one before though, He told us he did not know what was wrong with my husband, but he did not suspect dementia, as the EEG came back normal and was a positive sign.even thoguh i pointed out the eeg report and the fact my husband was dizzy all the time now, and i asked if the two could be related, ie poor blood flow to the brain, but he dismissed this straigh away saying it was not connecte.
He also told us that my husband could return to work and start driving again. I had to ask him several times if he was sure as i couldnt believe what i was hearing. He said yes he was sure. I told him this was contradictory to everything The neurologist and doctor at neuropsychiatry had ever told us. The new Neurologist told me that he would send my husband for some blood tests, another MRI and a memory test, everything my husband had done previously.
so we are back at square one, and my husband is slowley getting worse, i dont even recognise him sometimes now... and NO ONE will help us, and i dont know what to do for the best.
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