Dr diagnosed OH with young onset dementia, but after taking him off certain meds the sleep clinic had him on he improved loads & wasn't as mixed up. After attending memory clinic they said he has no dementia on pet scan & it's MCI your husband has. I am applying for power of attorney & now neurologist thinks it's Functional cognitive disorder & are going to see him in August. Anyone else had the same situation? My husband also has sleep apnea. Just don't know what to say to any family or friends as its changed again on diagnosis.
Update on my husband after scans showed brain shrinkage
- Thread starter nial67
- Start date
If people ask about your husband maybe say something vague like he's undergoing tests and the doctors are not quite sure what is wrong. I had to look up what Functional cognitive disorder is, and I can see that it can't be that easy to diagnose.
I'm sure I read somewhere that you can only definitively diagnose the type of dementia by examining the brain after death. That obviously doesn't help much, but it's good they are continuing to try and pinpoint what's going on and the fact that he improved after changing meds is a positive step forward in his journey.
Thank you for replying. It's the not knowing will my husband be going down the dementia road or not. Very hard as the change in my husband's personality & some days he would happily sit all day in silence
Oh yes it's incredibly difficult. With other diseases you can get diagnosed with a blood test and get a reasonably confident view of how it will progress. The best advice I can give is to keep a diary, tracking your husbands daily sleep, behaviour/activity and anything of note to see if there are any patterns that you can advise the specialist of... You know him better than any medical. professional.
I think it’s awful how long it takes for a diagnosis & when you do eventually get a diagnosis your left to your own devices We we’re told last August that my husband had MCI I asked about medication not given for MCI I felt my husband was struggling a lot more went back & told it was Alzheimers Unfortunately my husband has a low heart rate so couldn’t go on Donepezil He then had a 24/7 heart monitor at home When I rang to ask about results I was told it would be at least 12 weeks Unfortunately the memory nurse we saw is on long term sick leave I can’t remember how many times I rang to try & sort my husband out with some form of medication About 6 weeks ago I fell & broke my hand & cracked my ribs I was feeling very vulnerable & completely broke down After this my husband has been prescribed.Memantime I strongly feel it’s all to do with money If my husband had been diagnosed in the August he would have been on medication for nearly a year not a week I’ve read about a Dr Jennifer Bute she’s amazing she knew she had Alzheimers but kept getting fobbed off She stated if she had her diagnosis earlier she would have been put on medication so much sooner If this happens to a GP what can the rest of us expect If your interested she wrote an article in the Mail a few years ago which was very interesting or google her Dementia is only going to get worse with more & more people finally getting diagnosed I hope you get a firm diagnosis I’ve not heard of Functional cognitive impairment Make sure you push for all the information & I’ve found it exhausting but if I don’t advocate for my husband who will Good luck
Hi @Bevhar , did your husband get the results of his 24 hour heart monitor? Is he on heart medication?
My oh was diagnosed with bradycardia following a 24 hour monitor. He was on bisoprolol. His cardiologist took him off bisoprolol and re did the monitor. His heart rate was more stable and was 65 beats a minute rather than the erratic beats that went as low as 25 and averaged 40! Told never to have beta blockers again.
Hope you got decent pain relief today x
My oh was diagnosed with bradycardia following a 24 hour monitor. He was on bisoprolol. His cardiologist took him off bisoprolol and re did the monitor. His heart rate was more stable and was 65 beats a minute rather than the erratic beats that went as low as 25 and averaged 40! Told never to have beta blockers again.
Hope you got decent pain relief today x
Thank you Maggie very young doctor & very through he’s referring me to hospital for my arthritis My blood pressure a bit high 165/95 also not happy with my last lot of blood results for my diabetes Going back in 3 weeks Time we did finally get results & heart rate not low all the time Doctor was going to speak to the Cardiac consultant how long that will be before we hear anything is anyone’s guess Thanks for caring it means a lot xx
Thank you for you're reply. Means alot. What I find hard is after my husband 1st mri & ct scan both showed shrinkage in his brain. They said it was young onset dementia. But after they done a pet scan the result was your husband doesn't have dementia, I think they have to have a certain amount of protein amyloids to class in as dementia. We were there sent back to psychiatrist & they seen my OH a few times and said he had MCI. We got a call from Dr at memory clinic & after her speaking to the specialist they now think it's fuctional cognitive disorder & sent him stuff on a app to read to help him. They are going to see him next month at memory clinic. I'm struggling with it all & his behaviour can be so irratic especially if it's something i say he doesn't like. The outbursts & no reasoning with him. Won't eat or less it's put down to him. Ask him to contribute to costs of anything & he doesn't answer. He works alot from home & is fine with his job, but tires him out so much. He has lost all muscle mass & pyshio have picked up on this & he is getting another brain scan. I just think this is more than fuctional cognitive disorder. Nobody seems care what it does too us. I have been with my husband 38yrs. He is 57. Doesn't drink or smoke. He also has sleep apnea & uses a machine at night. Thank you for reading my story ❤️
Bless you he is very young have you got any children I think you know your husband best & if you think it’s more keep pushing as if he is diagnosed sooner rather than later as he can then start on medication It’s so hard for you especially as he can be unreasonable Everyone on here totally understands how your feeling & always here for you xxx
Brain shrinkage showed on my husbands scan and the diagnosis was Alzheimer’s.
The consultant who saw us said this was comparable to his mothers scan which was why he felt confident in his diagnosis.
My husband was diabetic and after reading about mixed dementia on this forum ie. Alzheimer’s and Vascular Dementia I realise that would most likely be the case.
I didn’t explore it any further with doctors because I felt he had been through enough and there would be nothing to gain as far as improved treatment was concerned.
The consultant who saw us said this was comparable to his mothers scan which was why he felt confident in his diagnosis.
My husband was diabetic and after reading about mixed dementia on this forum ie. Alzheimer’s and Vascular Dementia I realise that would most likely be the case.
I didn’t explore it any further with doctors because I felt he had been through enough and there would be nothing to gain as far as improved treatment was concerned.
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