I'm struggling with the waiting and not knowing

[MissG]

Hi, I apologise for the long post. I'm 42 and over a year ago I noticed I was having issues with my memory and language. My GP was great and after a long chat and lots of blood tests which came back ok I was referred to a memory clinic. The results showed issues with my semantic memory and so I was referred to a specialist. I had more blood tests, chats and an MRI. All results came back clear, but the consultant was still concerned so I was sent for a the blood tests again and a SPECT scan. The aim was to get results now and then check again in 12 months to see if there were any changes. He was not expecting to see anything on the scan as I am young, healthy and active. He just wanted a scan now to compare to later.

I did not chase the results and so when I went for my next consultancy appointment in January and was told that part of my brain at the front is not firing correctly I was worried. I have also now lost some sense of smell. The consultant then said he didn't want to wait 12 months and I would be tested in 6 months. They are doing everything and they are fantastic and I have been told what the next referral will be if it's still showing, and I was told that it will come on slowly if it is. However, I can't stop thinking about it.

I am due to ring up for my appointments in a couple of weeks. It is then going to be another month for the appointments at least and another month for the results. I hate not knowing...there's still a chance it's not and i am holding onto that hope. I stopped socialising as I hated having conversations as people would ask me where I went on holiday for example and I had forgotten, I realise though I need people around me and so I have started to socialise again with certain people. I sometimes think I am ok, but then I think about all the strategies I've put into place and how many times I check, check and check again and realise I'm not ok, just managing.

Is there anybody else who is having to go through this waiting and how do you cope with this? Thanks

 

[Hellyg]

Hi Miss G,

I am sorry to hear you are struggling. I am not experiencing the same personally, although my husband has been diagnosed with semantic dementia, so I understand about SPECT scans etc and can comment from what I observe, see and feel with him.

His scan clearly showed a lack of blood flow to the frontal lobes so he was diagnosed straight away. He also had a very noticeable loss of knowing th meaning of words.

I understand what you are saying about losing confidence, as this is what I notice with my husband. He is shuts down now in front of others, as he is fearful of not understanding what they are saying, yet will still communicate with me. I would say others understand, so if you explain any difficulties you have most people will be patient and understand and the social interaction is very much worth it. For a period of time speech therapy helped in that it introduced an iPad to help record picture with words and to record important phrases. We also printed pictures with words for items forgotten so they were to hand.

Practically my husband has retained other skills well, in that he still drives safety, does many household jobs.

I am not sure if this helps, but having experience of something similar I wanted to say something. The waiting is tough, I have to say that you that you still understand all of that is good, the waiting was so hard for me between appointments, scans and follow ups to be a diagnosis, but my husband was the oblivious and also to what the diagnosis meant long term when it came. Hard I know but maybe look to plan lots that you enjoy doing and I would recommend counselling if you can get it, it helped me focus in the positive and move forward.

Not sure if any of that helps, but keep talking as that will
H X

 

[Shedrech]

hello Miss G
a warm welcome to TP
I appreciate what you mean about waiting; I always prefer to know what's going on in any situation so I can deal with it - the medics need to do all their tests and comparisons, though, and I'm impressed that they have been upfront with you so far
I hope Hellyg's response has shown you that you've found in TP a good place to come to share your experience with members who recognise your experience and understand
so keep posting
best wishes

 

[MissG]

Hi Miss G,

I am sorry to hear you are struggling. I am not experiencing the same personally, although my husband has been diagnosed with semantic dementia, so I understand about SPECT scans etc and can comment from what I observe, see and feel with him.

His scan clearly showed a lack of blood flow to the frontal lobes so he was diagnosed straight away. He also had a very noticeable loss of knowing th meaning of words.

I understand what you are saying about losing confidence, as this is what I notice with my husband. He is shuts down now in front of others, as he is fearful of not understanding what they are saying, yet will still communicate with me. I would say others understand, so if you explain any difficulties you have most people will be patient and understand and the social interaction is very much worth it. For a period of time speech therapy helped in that it introduced an iPad to help record picture with words and to record important phrases. We also printed pictures with words for items forgotten so they were to hand.

Practically my husband has retained other skills well, in that he still drives safety, does many household jobs.

I am not sure if this helps, but having experience of something similar I wanted to say something. The waiting is tough, I have to say that you that you still understand all of that is good, the waiting was so hard for me between appointments, scans and follow ups to be a diagnosis, but my husband was the oblivious and also to what the diagnosis meant long term when it came. Hard I know but maybe look to plan lots that you enjoy doing and I would recommend counselling if you can get it, it helped me focus in the positive and move forward.

Not sure if any of that helps, but keep talking as that will
H X

Hi H

Thanks so much for your response. I am trying to stay positive and I am doing what I can to help myself. I've had to give up on things I enjoyed like crosswords as I can no longer remember answers and sudoku. I loved sudoku, but when I made little numbers on what it could be, by the time I figured it out and rubbed them out I forgot what number it was? I do brain training each night with an app though which I enjoy. I also love running but this gives me thinking time, which is not always great.

I do doubt myself sometimes and at times lack confidence in things I've always done. Luckily my organisational skills have not been affected and so I am still working and that is helping as it takes my mind off things, although I get reminded of my memory issues and language skills by my colleagues. I have not told them all, just close colleagues.

My partner is very good and he is helping me by planning fun things. I just hate it as I forget so easily. I went on holiday in February and I can't remember much of it. I've stayed at the resort before so I know where we would have eaten, but I remember little about the holiday or hotel or even which resort we went. I remember from photos though so I have just been away again and I have taken lots of photos to help me remember this one.

Thanks again and I hope you and your husband are ok x

 

[MissG]

hello Miss G
a warm welcome to TP
I appreciate what you mean about waiting; I always prefer to know what's going on in any situation so I can deal with it - the medics need to do all their tests and comparisons, though, and I'm impressed that they have been upfront with you so far
I hope Hellyg's response has shown you that you've found in TP a good place to come to share your experience with members who recognise your experience and understand
so keep posting
best wishes

Hi

Thanks for the welcome. I do just want to know as I can deal with it and help my other half prepare for it if it is, likewise if it isn't then what is it? and is it something simple and I've been worrying for nothing....oh well.

They have been very good and talked about all the steps on what they will do. They are being very thorough. Can't fault the NHS at all.

Thanks again
J x