Misdiagnosis ??

[Ang79]

Hi everyone. Im feeling a bit low and confused at the moment. My husband was diagnosed with vascular dementia in Dec 2015 he is only 44 and has a lot of other conditions to deal with aswell he is also registered blind. When we first got his dementia diagnosis we both felt devastated and it took a while for it to sink in but lately we've been trying to deal with it with the help and support from alzhemiers UK. My husband also has epilepsy but his neurologist who deals with this has been really off with us. When we told him about the diagnosis his reply was " huh I don't think so in a man of his age " in a sarcastic tone . He has sent my husband for a load more scans and different tests and we have just been called into see our gp today about these tests. The tests have come back the same as before showing atrophy and thickness in the brain ( not sure what this means) but the neurologist is still saying he does not believe it's dementia where the other consultant who diagnosed my husband is standing by the dementia diagnosis. The doctor also told us today that the neurologist has requested my husband to have a test for HIV as he wants to rule this out which we have declined and already know it definitely is not this . The bottom line is we have been through so much this past couple of years with everything going on and my husband is so depressed with it all he just feels like an object to keep testing on rather than a human being and I'm struggling to keep a smile on my face. We have to go back to see the neurologist tomorrow and were dreading what he's going to say to us this time ( he has no nice communication skills) . Just wondering if anybody else has been through anything similar with a diagnosis or any advice to how to deal with all this different information. I just want it all to stop at the moment . Thankyou for reading xx

 

[Slugsta]

How terribly upsetting this must be for you both, especially as your husband is so young! I'm sorry that the neurologist has such poor people skills, that must just make things harder

I'm afraid I don't have any specific advice for you but hopefully someone will be along soon who can offer something useful.

 

[1mindy]

Wow. No knowledge of anything so awful. But I would encourage every test offered to get the best possible picture. Keep your chins up through this very trying of times.

 

[Sunseeker1977]

I am very sorry to hear of your experiences with your consultant. My wife had a similar experience with a consultant and fortunately he was moved to another area and we got a much more understanding one. .... Is it possible for you to change your consultant ... they are not all rude and lacking in basic people skills ..... most are very understanding!

 

[Ang79]

Thankyou. We have asked to change consultants but apparently he is the best in this area so they are reluctant to change us over were back to see him this afternoon so will see how it goes. I understand he wants to look further into it with different tests but a bit of understanding from him without all the abruptness and sarcastic comments would be nice. Things are so hard at the moment without him being rotten towards us both . Xx

 

[cragmaid]

Ang, I know it's hard but stand up to this bully. Hospital Consultants will often talk down or act arrogantly because no one has said " Enough! I'm a patient not an idiot".i You can ask for another consultant anyway, you don't have to put up with attitude.

I would let him perform whatever tests he likes, provided they are not invasive. Diagnosis of Dementia is never a simple process and often the only way to confirm is to rule other things out.

If you are really unhappy, contact the PALs service at the hospital.

 

[Ang79]

Thankyou everyone. We went for the appointment today and basically after putting my hubbie through all the tests again it has come back with the same diagnosis that he has early onset vascular dementia. We just want to be able to take each day as it comes and enjoy our lives together as much as we can without the upsetment from people like this neurologist . We did get some good news today though and that is that he is being transferred to another hospital and he won't be treating my hubbie again so that was a relief I just hope the next one has a bit of compassion and treats people like hunan beings fingers crossed xx