Best way forward for a diagnosis.

[roxane]

My husband and I had our third appointment last week with the psychiatrist who has speciality in dementia. He saw my husband for the first time end of Feb this year.
We left with no diagnosis, good or bad I dont know any more. The Psychiatrist did dwell on possible illness in the family, mainly my husbands Dad's side, but we are not aware of anything.
We are now awaiting another appointment with the Neurologist who has been looking after my husband for the last three years at the end of the months.
The neurologist keeps telling me "no diagnosis is better than a wrong diagnosis". I think I am slowly beginning to understand and appreciate this, though it is just dragging on forever and at times it would be so nice to be able to explain to our children something more definite.
I now want a list of all the tests and investigations done for my husband and also the results. I want to have blood tests done at the PRION Clinic in London. I have had a good look at the web page but am unsure on which way to go. Do I ask the neurologist to do this, my husbands GP or do I just send off a letter myself.
I fear it is all about money and who will be paying the bill.

[Bodensee]

My husband and I had our third appointment last week with the psychiatrist who has speciality in dementia. He saw my husband for the first time end of Feb this year.
We left with no diagnosis, good or bad I dont know any more. The Psychiatrist did dwell on possible illness in the family, mainly my husbands Dad's side, but we are not aware of anything.
We are now awaiting another appointment with the Neurologist who has been looking after my husband for the last three years at the end of the months.
The neurologist keeps telling me "no diagnosis is better than a wrong diagnosis". I think I am slowly beginning to understand and appreciate this, though it is just dragging on forever and at times it would be so nice to be able to explain to our children something more definite.
I now want a list of all the tests and investigations done for my husband and also the results. I want to have blood tests done at the PRION Clinic in London. I have had a good look at the web page but am unsure on which way to go. Do I ask the neurologist to do this, my husbands GP or do I just send off a letter myself.
I fear it is all about money and who will be paying the bill.

roxane, there is no reason why you cannot phone the clinic yourself and find out the procedure although details of this are on the website. I cant blame you for wanting to know everything, we have the right to know what the results are, the neurologist/GP has a duty of care to give your husband the best treatment and tests available, there seems to be a lot of research going on into AD & dementia but for some reason we are not told about it by the specialists, I dont underdtand this. The tests done at the prion clinic according to their website are free of charge, I am surprised the neurologist are not suggesting this to you, you can always scan the page and show him/her the details if they seem clueless.

Just to add to this if you still feel that you are not receiving the best help then ask Why Not? and can they put the reasons in writing, as you are unhappy and will look to contacting your MP.

[stanleypj]

I think you may well be right when you say you are beginning to understand and appreciate the neurologist's view that 'no diagnosis is better than a wrong diagnosis' - a sensible neurologist, worth his weight in gold I would think. I would even say that, depending on who you are, it's a road on which it's better to travel hopefully than to arrive. My wife and I were somewhat reassured to be told at various points that the 'obvious' diagnosis was not necessarily correct. We found that it was possible to 'get on with our lives' - one diagnosis and 12 years later, I am happy that we had all that time together thinking that things might not be so bad after all.

Surely it's possible with the children (don't know their ages of course) to look in a positive light at all the things he can still do and enjoy? What's wrong with him? The doctors are still trying to find out. In the meantime, we're going to carry on living the best life we can.... Do you think that your children will really benefit from 'something more definite'?

Please don't take these ramblings in the wrong way and, of course, feel free to disagree. I wish you and your husband all the very best.

[roxane]

Thank you so much for being there and for your reply to my thread.
I see a lot of people have read it but no one really attempted to give me a new point of view - could be my husbands condition doesnt fit in to Alzheimer's Forum though I get a lot of comfort from reading and learning more about other people's experience.

To be honest without this I wouldnt have got to where I am today in my approach to my husbands illness - so thank you to all of you even the friends who just take a look at my thread.

Yes, does it really matter if we dont get a diagnosis if we still dont have a cure? from my point it is perhaps a case of with a diagnosis there could also be a prognosis which I feel could be in our children's favour.

The children are almost 21 and 18. My main concern is for my daughter who goes though periods of being very angry and telling me I should find a residential home for her dad to be cared in.
I imagine she sees how her Dad's illness has also effected me, our shared life and the limitations it puts on every day.

In my thoughts and understanding we are at the moment living life with a continuous bereavement which effects us all differently - I have already lost my husband, perhaps partly accepted this but our daughter is fighting loosing her Dad. Our Son who appears to have a very different approach is taking it very well again possibly accepting reality rather than fighting it.

Thanks again
Lisbeth

[tre]

I think it is very difficult to be without a diagnosis. We started to notice difficulties in 2003 when my husband was 62 but it was not until early 2008 we got a diagnosis of PCA which is a rare form of Alzheimers. Having said that it took us until Autumn 2007 to actually see a neurologist and on our first appointment he said there was a possibility of something very rare and sent us to a London hospital for further tests.
We had EEG, lumbar puncture and scans etc but most of the tests seemed to be ruling out stuff rather than coming up with the diagnosis. Even when we finally got the diagnosis it was a "provisional diagnosis". It was not until years later that it was explained to me that they felt they could only confirm diagnosis post mortem so this provisional diagnosis was all you got. I spent four months refusing appointments waiting for my husband's confirmed diagnosis.
The problem as I saw it of being undiagnosed was the feeling that if only you could get a diagnosis there might be a treatment or even a cure. Without diagnosis you feel left in limbo, especially when it is blindingly obvious there is something wrong.
The support group for PCA is run from UCL and we have currently got shared care with UCH and our local consultant. Many of the neurologists from UCH and Charing Cross hospital have been speakers at our meetings and have been very sympathetic , helpful and compassionate.
When I was struggling to get Ebixa prescribed for my husband I came across a Neurologist at Charing Cross who you could go to privately for a second opinion. I was very impressed with him although in the end our PCT approved the treatment. If you would like his name send me a PM.
with best wishes ,
Tre

[seaurchin]

Hello Roxane,

I am sorry to hear of your husband's difficulties and your families distress.

We had a long and difficult battle to get a diagnosis. My husband's GP said two years before we had a formal diagnosis he thought my husband's difficulties were likely to be dementia. He only confirmed what I already believed.

For us the benefit of having a diagnosis was the the doors of support suddenly swung open and we were provided with help and support which we had been struggling along without for so long. Family and friends immediately became more tolerant of my husband's behaviour and less judgemental which had been very upsetting. It was also a relief to me as I always felt no one believed me when I described my husband's difficulties including family.

My husband had many tests including the 'Prion' test but the final diagnosis was confirmed following a SPECT scan of his brain. It was a long and tough road reaching this point but whilst little medically can be done to fight the disease the extra support provided from having the diagnosis has helped my family cope much better with the situation we have found ourselves in.

The best help we received was from an Older People's Services Psychiatrist who took my husband's case on (even though he was only 48 at that time). The neurologists we saw weren't listening to us and just kept sending us away. We had to be very persistant.

I hope this post is of some help to you and I can only recommend you keep asking for answers. I am sending you my very best wishes at what is a difficult time.

Helen

[Bodensee]

Hello Roxane,

I am sorry to hear of your husband's difficulties and your families distress.

We had a long and difficult battle to get a diagnosis. My husband's GP said two years before we had a formal diagnosis he thought my husband's difficulties were likely to be dementia. He only confirmed what I already believed.

For us the benefit of having a diagnosis was the the doors of support suddenly swung open and we were provided with help and support which we had been struggling along without for so long. Family and friends immediately became more tolerant of my husband's behaviour and less judgemental which had been very upsetting. It was also a relief to me as I always felt no one believed me when I described my husband's difficulties including family.

My husband had many tests including the 'Prion' test but the final diagnosis was confirmed following a SPECT scan of his brain. It was a long and tough road reaching this point but whilst little medically can be done to fight the disease the extra support provided from having the diagnosis has helped my family cope much better with the situation we have found ourselves in.

The best help we received was from an Older People's Services Psychiatrist who took my husband's case on (even though he was only 48 at that time). The neurologists we saw weren't listening to us and just kept sending us away. We had to be very persistant.

I hope this post is of some help to you and I can only recommend you keep asking for answers. I am sending you my very best wishes at what is a difficult time.

Helen

Hi Helen,
Did your husband have the current blood test to rule out vCJD that Prof.Collinge is currently trialling at the Prion Clinic?

[mollymalone]

I think it is very difficult to be without a diagnosis.
Tre

I completely agree. Putting a name to 'it' may not benefit the patient but it helps the carer explain the problem to others, it makes it slightly easier to get practical help, and it gives you some idea of prognosis. These are all things that I imagine might make you feel a bit more in control when everything is falling apart. But we're four years and counting still without anything more specific than 'progressive cognitive impairment' so I'm only guessing.
I wish you well.

[seaurchin]

Hi Bodensee,

My husband was tested for vCJD and it was negative.

His consultant was very thorough once his difficulties were finally recognised. A SPECT scan confirmed the Drs diagnosis.

Regards,

Helen

[Bodensee]

Hi Bodensee,

My husband was tested for vCJD and it was negative.

His consultant was very thorough once his difficulties were finally recognised. A SPECT scan confirmed the Drs diagnosis.

Regards,

Helen

I am glad your husband had the vCJD blood test and it was negative, which is available at the prion clinic on the NHS I dont beleive that many people with neurological problems are aware that this tests exists, but it is good news that your husbands consultant was very thorough.