In limbo waiting for diagnosis

Discussion in 'Recently diagnosed and early stages of dementia' started by Tricot, Jan 22, 2018.

  1. Tricot

    Tricot Registered User

    Jun 20, 2017
    84
    France
    It's about a year since my GP referred me to the memory clinic and from the 2 memory clinic visits and associated tests and scans the doctor said I don't have dementia, although he gave me a follow-up appointment for March. But then what have I got? He didn't mention mild cognitive impairment. There's no doubt my head is just not functioning the way it used to. It's very worrying and of course I'm fearing the worst especially as the doctor said, "you don't have dementia at the moment but I can't speak for the future". How do other people cope with being in limbo like this?
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    2,083
    N Ireland
    Hello @Tricot , have other possibilities like depression, thyroid, vitamin deficiencies etc., been ruled out? I know these things can cause symptoms that can be mistaken for the onset of dementia. Were your results somewhat abnormal and is this the reason for the statement made by the doctor?
    The whole thing can be unsettling. My wife was under investigation for anxiety and depression before being told she had MCI. When we researched MCI we saw that people can come back from that when an underlying anxiety or depression is treated so my wife lived in hope of a cure while I witnessed a decline that was eventually shown by further tests and a PET scan. The process was long winded and somewhat cruel.
    All I can advise is that you keep posting here as you will get understanding and support as well as information.
     
  3. Tricot

    Tricot Registered User

    Jun 20, 2017
    84
    France
    Thank you for your response @ karaokePete. I don't know how you managed to reply as my message wasn't showing up either in Recent Posts or Memory Concerns, at least not that I could see!

    The other possibilities have been pretty much ruled out except for vitamin B12 which I've paid privately to have double-checked, results not back yet. The other results were all OK except for white matter lesions found on the MRI which the radiographer said were due to high blood pressure, but he's not a brain specialist. I've been researching these lesions and it seems they're also found in people with depression which I've suffered from on and off all my adult life but I've never had the cognitive problems I'm experiencing now.

    I'm sorry to hear about your wife's decline. You're obviously making the best of the situation and I'm sure she appreciates you even though it doesn't always seem like it.
     
  4. Troyterry15

    Troyterry15 Registered User

    Feb 7, 2015
    2
    London UK
    Hi Pete your post reminds me very much about my 2017 experience of waiting for my brain scan results after being referred by a GP after setting my mind at rest about the possibility of the tunnel carp condition -after the GP's trained eye focused on the 'seen' evidence of my wrist swelling during a psoriasis flare, it took a full year to get the normal results of the scan.

    Like you I had a concern about Dementia because I had been experiencing dizziness and disorientation with some very slight loss of balance hence the need for the rhumatology clinic to refer me for the scan, anyway after the GP correctly diagnosed psoriatic arthritis I re named a previous search about the emotional component of psoriasis as dizziness and disorientation in psoriatic arthritis and the google search immidiately found a short page about the the work of the US vestibular disorders association,(inner ear balance system) I lost no time emailing them and the promptly replied with a fact sheet describing the BPPV exercises that are used to correct problems that arise when the calcium crystals that form part of the inner ear (vestibular) system fragment and interfere with the nerve signalsto the brain.

    As soon as began practising those exercises the dizzyness when I turned my head while laying down on my bed with head tilted deminished and have not returned,my thinking and minor balance issues have also improved.
    The most important thing I need to share about this is that a few years ago I was diagnosed with anxiety issues so when a year after the GP referred me and I had the brain normal scan result I was able to discuss my theory that the anxiety had acted like an amplifier for what were the first indications of a vestibular issue and that has given me a foundation to explore further and share with others.
    Terry
     
  5. PJ

    PJ Registered User

    Jan 26, 2017
    233
    Female
    Hi Tricot
    How are you doing now? It sounds like you are in a similar situation as me. I’ve been seeing the mem clinic on & off for 15mths, 2 scans (nothing showed) drive assessment (all ok) I gave up my job last July as I was getting so confused. I’m now having a SPECT scan on 6/3 I’m praying for an answer. I totally feel your pain.
    Do you mind me asking how old you are? I’m 51
     
  6. Tricot

    Tricot Registered User

    Jun 20, 2017
    84
    France
    Hello PJ, I'm 67. A SPECT scan and lumber puncture might be on the cards following my next memory clinic visit due next month. You have just over a month to wait for your scan, not too long but it sounds like you're counting the days. Sometimes I feel I don't want to know, I want to remain in ignorance but in hope. Other days I'm desperate for an explanation. It depends on what sort of day I've had. Wish you the best of luck with the scan and hope you don't have to wait too long for the result.
     
  7. PJ

    PJ Registered User

    Jan 26, 2017
    233
    Female
    Hi Tricot sorry I’ve only just seen your reply. I do understand what you mean ignorance can be good :) it’s just I’m the sort of person who always needs an answer, explanation. You are right not long now for my scan. I hope you are well.
     
  8. Tricot

    Tricot Registered User

    Jun 20, 2017
    84
    France
    Hello PJ, I'm also the sort of person who always needs an explanation but on this occasion I'm very frightened to have my worst nightmare confirmed. Looking for an explanation other than dementia has led me to spend innumerable hours researching on the internet. I do feel I've just been left to dangle by the memory clinic. Imagine going to a special clinic where cancer was diagnosed, them sending you away with no diagnosis but saying come back in six months and we'll see if you've got cancer then! It just wouldn't happen. No helpline, no counselling, no advice on nutrition, exercise, things that might help. I will have the scan and lumbar puncture as I do need to know but at the moment I feel I couldn't bear to hear the worst.

    On the plus side, I've found some encouraging research on a link between MCI and B vitamins and will post about it later.

    How did your folates and B12 results look on your blood tests? It seems most health professionals are shockingly ill-informed about the impact of micro nutrient deficiencies.
     
  9. PJ

    PJ Registered User

    Jan 26, 2017
    233
    Female
    It sounds like we are going through similar things atm. It’s a waiting game.
    I was just told my bloods were all fine, I’m not going through the menopause. I have over many years suffered with depression but have taken the same medication and it works for me.
    I’m very fortunate to have a supportive husband who has promised me that whatever this is we will get through it together which helps.
    I wonder why you have to have the lumbar puncture/scan not a spect one like I’m having?
     
  10. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    625
    Kent
    Tricot lives in France, they may have different protocols there, and different access to technology. I’ve noticed differences in the US and Australian methods as well.
     
  11. PJ

    PJ Registered User

    Jan 26, 2017
    233
    Female
    Oh right I hadn’t realised that you have a good point :)
     

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