1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Hi everyone - Need some advice

Discussion in 'Welcome and how to use Dementia Talking Point' started by JemimaK, Jun 10, 2015.

  1. JemimaK

    JemimaK Registered User

    Jun 10, 2015
    2
    Birmingham
    I honestly don't know if I am on the right forum but just a little confused at the moment so was hoping to get some advice in the right direction. I am a single parent, 28 years old and just finished university(late starter I know ) however I have been suffering from headaches for a long time. Anyway cutting a long story short, I had a little phase where I had a suspected T.I.A and doctors ruled it out however did do a Cat scan. After being told my scan was clear I suffered from months of continuous headaches and neck ache. After a few trips to the doctors and being told it was only tension headache, I decided to go back to my doctors to see another G.P in that practice around 5 months later as I had noticed a tremor in my hands and had slurred speech(which was in April). I was then told my scan had flagged up frontal lobe and cerebral atrophy. I am not sure why I wasn't told this before but anyway I eventually got referred to a neurologist( 7 months later after my scan). I am still waiting for my appointment but I have used the internet to try and find out what this means. Although I have not been diagnosed I read something about dementia and just wondered if someone can relate to this. Thank you
     
  2. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    What a lot you've got to deal with Jemima ... I hope you get good, helpful answers from the medics soon.

    I hope and expect some people within the TP tribe will be able to provide better informed advice.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,715
    Female
    London
    You're very young to have any form of dementia, even fronto-temporal. While younger people can get it, younger usually means 45-65. While it's not completely out of the question, I wouldn't trawl the Internet worrying until the appointment. FTD is quite hard to diagnose and you might have to go through some more tests to find out what it might be that's wrong with you. Maybe it would be a good idea to take someone close to you to the appointment as it can be important to know what symptoms others might see in you and what your medical family background is.
     
  4. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    What a worry for you, Jemima. It does feel unfair that you've been told this snippet of information, then left to worry about it :(

    To put it in context, everyone begins to suffer a very mild degree of brain atrophy with age ( by which I mean from the age of 25 :eek:). The important things for the medics to establish will be whether you have it more than most people, and if you do, what's causing it. I believe a whole range of factors can be involved.

    Then, the next question is, how does it affect you? You'll know some possible things ( like maybe headaches and tremor). However, I agree with Beate that it would be good if someone who knows you well could come to the appointment with you. This should help in thinking things through both during consultations and afterwards.

    As Beate says, you would be very Young to have dementia. Please try not to worry ( easily said, I know) and do come back here and let us know how you get on.

    Sending you all the best

    Lindy xx
     
  5. Fred Flintstone

    Fred Flintstone Registered User

    Aug 28, 2014
    133
    S. E. England
    JemimaK,

    I am now far too tired to give useful feedback tonight, but hope I shall be able to respond tomorrow. This is the best forum for you until you are introduced to a better one.

    Stay in touch, please,

    Fred
     
  6. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    #6 Suzanna1969, Jun 11, 2015
    Last edited: Jun 11, 2015
    Jemima, my Mum has Vascular Dementia and my dad has Vascular Parkinsonism.

    Both conditions are, apparently, hereditary.

    Just over a year ago I came over a bit weird at work. It was not the first time it'd happened but I'd brushed it off before. I had Googled my symptoms of course: Numbness and aching in both arms, mainly my left, tremors in both hands. Weird flashing lights in my peripheral vision, a strange 'crawling' sensation in my left shoulder and other strange things... I thought that perhaps I'd suffered a few mini strokes. When it happened at work and my boss called an ambulance I couldn't brush it aside any more. The paramedics confirmed my BP was through the roof (and it still is, I am on BP tablets now) and there was cause for concern I'd had a stroke of some kind.

    Obviously I was terrified I was going to get early onset dementia and lose my mind.

    CT scans at the hospital showed I had NOT suffered a stroke. After a few hours my BP came down (although still high) and I was released. The (very young) doctor who was supposedly looking after me said that they would ask my GP to refer me for tests as my symptoms, no longer seen as being stroke related, were indicative of the early stages of MS. She smiled and virtually shoved me out the door.

    Nice huh? I had to wait SIX MONTHS for the tests and the eventual diagnosis. In that time I had an MRI and a Visual Evoked Response test. The lovely lady doing the VEP test chatted with me as she could tell I was pooping my pants. She asked me if I had MS in my family. No. She then asked if I had MIGRAINE running in my family. Er yeah my Mum suffered from them terribly until her menopause. But she has splitting headaches and sickness, not arm aches and numbness and fuzzy vision, they're not migraine symptoms are they? Oh yes they are, she said!

    And THAT is what it turned out to be. With the stress I've been under it's hardly surprising I guess. Funnily enough, I haven't had those symptoms nearly so badly since I found out I DON'T have MS.... weird non?

    So Jemima, don't assume the worst. You might be suffering from migraines, tension headaches, stress... all of the above? It sounds like your life has been pretty stressful of late after all.

    More than anything else, good luck and PLEASE try to calm down. xxx
     
  7. JemimaK

    JemimaK Registered User

    Jun 10, 2015
    2
    Birmingham
    :)

    Thank you to everyone who has taken their time out to reply to me. I will just have to wait and see until my appointment arrives and hope its nothing serious. Will let you know how I get on :)x
     

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