Yet another diagnosis confused and so upset, not sure why

[Sringtime]

Hello All,

I am feeling so upset today, we have just got back from hubby seeing the Neurologist. He seems to think that my husband hasnt got Vascular Dementia (he was diagnosed with VD in Feb of this year at the Memory Clinic, by a different Specialist, who also said she thought he had Altzheimers starting as well). However, when the Neurologist today looked at the scan which shows shrinkage etc, he was very concerned at the amount of weight hubby has lost and the muscle wasting which is quite bad. The neurologist then went on to say with the greatest of respect to the other Specialist he disagrees and thinks with symtoms hubby is presenting with and looking at CT and MRI scan results, he probably has Frontotemporal Dementia. He was very kind, but I couldnt ask him to many questions with hubby in the room, Nuerologist suggested my husband be admitted to hospital for more tests and then we can have a chat again. I know we are extremely lucky to have such a thorough Neurological team and I am not complaining. But my husband is so frightened of going into hospital, although I am reassuring him its only for tests. But, having got back from the hospital I have been reading up about Frontotemporal dementia and dont know what to say to my husband. I am sitting here now in total shock, and I really cant understand why I am feeling like this as we knew it was Dementia, and all my husbands symtoms and behaviour all point to this being the right diagnosis, but the "label" seems to have me confused and scared once again. I dont know what to do any more.

 

[Sammyjo1]

Hello Springtime

It must be a real shock to find out that there is a different diagnosis to the one that you had got used to. I'm afraid I don't know anything about Frontotemporal Dementia but I'm sure someone will be along soon who does.

It's so hard isn't it when you are faced with all this new information and no-one to share your fears with? That's why TP is such a good place to come and talk about how you are feeling.

I hope that your husband's visit to hospital isn't too difficult for him or for you and hopefully you will be able to get more information from the Neurology Team

Take care

 

[emwmarine]

I guess you could arrange a private appointment with the specialist to discuss what the possible treatment interventions would give. He could do it in a way the doesn't breach your husband's confidentiality at all.

Some questions might be:

1) Is there still a possibility of the condition being something completely different that could be treatable?

2) If it is a form of dementia what is the impact of any treatment on the progress of the disease?

Based on that you can then decide with your husband whether he wants to go through the stress of a hospital visit. Knowing the name of the condition might not be worth the hassle of going through all the pain of a diagnosis.

 

[jaymor]

Hello Springtime,

Such a shame that you have been upset by the change in diagnosis. I have just had a very quick read of symptoms of frontotemporal dementia and all those symptoms my husband has displayed over the 9 years he has been diagnosed as having Alzheimer's. Our friend has vascular dementia and he too has shown most of these symptoms.

So try not too worry too much, your husband will progress through this disease as most do, in his own time and in his own way. Medication might be a little different so it is best that he gets a definite diagnosis.

Take care,

Jay

 

[Jinx]

Hi Springtime

Sorry you've had such a rotten day. I don't have anything to add really except to say take a deep breath and try not to second guess what the future holds. If you can find out a bit more about potential treatment and expected progression that may help. Big hug.


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[Sringtime]

Thank you to you all for taking the time to reply to my post. xx