Hello need advice (from the uk)

Discussion in 'Fibromyalgia Main Forum' started by julie87, Aug 23, 2011.

  1. julie87

    julie87 New Member

    iam new to the forum and really need some advice.i was diagnoised with fibromyalgia four years.up untill four years ago i was working and at the gym and had a full life.
    when i got fibromyalgia this stopped as i could no longer work.
    my life was still fine as i went out and still did things though.
    i got married nearly four yrs ago and iam very happy and i have a daughter who is 23 from my first marriage.she lives not far away from us.
    anyway last may i got a virus which lasted two months,i do get viruses which dont usually last that long and i get chest infections,the week before this virus finished i couldnt talk properly i was like jerking when i talked and my doctor said this was at tic and nothing i could do and it should go when the virus goes.
    it did go and i had nothing since.
    last october i was at the bank i felt fine and al over a sudden my speech started to slurry i felt quite tired.i do have a sleep problem and have been seen a consultant at a sleep clinic.i have had this problem for over thirty years and i take half a sleeping tablet a night and i get a certain amount of sleep.
    anyway i got back to the car and it eased off and felt beter then drove home.i had another attack which happened a month later,i was out shopping with my husband i felt tired and then week all over and my speech became slurry this lasted about 20 minutes then went off. i had a few more over january and feburary,then in march.
    with all of these attacks i was not stressed and very happy in myself.in june of this year this is what happened.

    i was at the job centre with my daughter talking to a lady with her about a job we were in the office it was a warm day and i was tired.my daughter is deaf and i was signing to her when i came all over very tired and arms and legs just went week and i slumped in the chair,my speech was slurry and my head was going from one side to another i couldnt keep it up.i knew what was going on around me but could not talk,this seemed to go on for ages but i think it was 20 minutes,everyone there that saw me said i was asleep but i was not as i knew what was going on.i then got up to go out of the jobcentre and my daughter thought i was ok but i didnt feel it.my legs felt that i was going to fall down and a security guard came over asked my daughter if i needed help she said yes they helped me to a chair i couldnt walk proper was very wobbly,while i was there my eyes were open and closed and my head was flopping from one side to another,they got me into a wheelchair and my daughters friend took me home.it took over an hour maybe two to feel ok again.

    since then i have had a quite a few attacks sometimes three or four in a day which leaves me knackered and tired.my doctor sent me for an ECG which came back normal,blood tests were normal apart from my ESR which goes up and down.
    for the last few days i have been feeling shaky but not had another attack and its been a week.

    the symptons are

    muscle weekness
    head floppy
    eyes open and close,and flicking
    slurring of my speech
    i know everything going on around me but i cant talk.

    if someone can get back to me and let me know if this a non epileptic attack.
    thank you
  2. TigerLilea

    TigerLilea Active Member

    Have you been checked for any stroke activity? Slurring of speech is often associated with strokes. You should ask your doctor about getting a head CT scan.
  3. TigerLilea

    TigerLilea Active Member

    You might want to delete your other two messages so that all the replies stay in the one thread. It will make it easier for you and everyone else to follow the conversation, rather than bouncing back and forth between three threads. :)
  4. julie87

    julie87 New Member

    Thank you for all of your replys and making me welcome.
    Sorry I sent the messages three times I will delete them.
    I have had a full blood test was normal and I had a ECG done by a nurse at my doctors said was normal.I have seen a neurologist and I had a EEG that was normal as well.
    The neurologist will not do anymore tests as said it's in my head. So looking for advice.I don't take any medicine.
    Thank you Julie
  5. Bunchy

    Bunchy New Member

    I am in the UK also.

    I think you need to ask for another referral to a reputable neurologist and insist on an MRI scan - this does not sound like FM.

    Please explain all this to your doctor (bring your daughter along so she can confirm that she has witnessed these attacks) and be firm.

    Your doctor should not be dismissing this lightly.

    I hope you find the answer.

    Take care,

    Bunchy x
  6. julie87

    julie87 New Member

    Hello Bunchy
    Thank you for replying
    I have shown letters from the job centre, the security guard who saw this and my daughter and he takes no notice just says it's non epileptic attacks and that's it. the other doctors say the same and the neurologist as well,I have got another appointment for a second opinion to see another neurologist but it could take awhile,I have rang up to see if I can get seen quicker but I can't, I am firm with them and have been going on at them but I get no where.my daughter us deaf but she wrote a good letter and it made no difference.I know it's not FM and I think it's something else that's why I don't want to go to the hospital but I have made my mind up now and will go on Friday, the reason I am going on Friday.
    I can't ask for a scan but they will do it hopefully.
    Will let you know ok.
    Thank you
  7. Bunchy

    Bunchy New Member

    what you describe does sound like some sort of seizure episodes.

    You do have the right to request an MRI scan and should insist upon it.

    Do you have an older doctor at your practice? Sometimes older doctors can be more thorough.

    Don't give up until you get somewhere - have you tried the NHS helpline or even your PCT - you could tell them you feel you need an MRI scan and further investigation into your episodes (and why) but your doctor is being dismissive and you are worried.

    Love Bunchy x

  8. luigi21

    luigi21 Member

    Hi, yes what your are saying is odd, i mean fibro does come with attacks of fatigue and slurred speech, and twitchy jerky movements, and i too have had high esr. Ive read here people suggesting maybe seizures, or strokes, you noted that your sleep is not great, mine either. Have you ever had a sleep study done? I'm just wondering if there maybe a connection between the attacks of slumping and slurry speech, wonder if it could be a sleep disorder?

    keep us updated

    all the best
  9. julie87

    julie87 New Member

    Thanks for replying
    my sleeping problem I have had over thirty years and that was why I was seeing the neurolgist,only thing is now she will not see me as she has already made her mind up what I have.I have asked my doctor for a second opinion so will see what a different neurologist says.I will let you know what happens.
    Thank you
  10. julie87

    julie87 New Member

    Hi Bunchy
    at my surgery they are all young doctors mostly 30s and younger.
    and my doctor told me he had a meeting with the other doctors and didn't have a clue so he asked the neurolgist and she told him it was non epileptic seizures so he isn't bothered now. As far as he is concened I have a diagnose but to me I don't.yes I will ring nhs help line and explain my symptoms and see what they say.if I don't get anything then will get ontoch with the ptc.
    Thank you for your advice and will let you know.
    Take care x
  11. Bunchy

    Bunchy New Member

    I would go ahead and ask NHS Direct and explain all this (and your doctor's negligence) to your PCT - how does your doctor know that you are not suffering from epilepsy or having mini strokes? Ask him/her that!!

    The point is this could be dangerous (let alone extremely frightening and distressing for you) - what if this happened to you when you were crossing a road for example or at the top of some stairs?

    I wouldn't let this lie - you deserve further investigation, an explanation and appropriate treatment if necessary.


    Bunchy x
  12. simpsons

    simpsons Member

    hi julie

    i have a dx of m.e. however i have had these type of attacks too

    often times it is when being interviewed and asked many questions in a row for a period of time

    my speech slurrs and my limbs become floppy my hands trailing

    mulit sensory input is something the m.e. brain cannot deal with

    when i stop the intense activity or sit somewhere quiet it stops

    it became really very bad when i was refused sleep medication in uk and flickering lights would cause my eyes to roll and rolling computer screen also sent me this way

    it is frightening i understand, i recall seeing faces of friends with the middle black as if a void

    i could not hear them talking though i could guess they were talking to me

    i found that sleep was the key to this and avoiding places like banks and shopping cntrs when busy, only going out when i was rested enough, and just very short trips

    please let us know how you get on

  13. Mikie

    Mikie Moderator

    You need further followup to rule out other conditions. Seems to me that the doc has just begun investigating what might be causing these symptoms. Good luck to you.

    Love, Mikie