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Thread: Feeling a bit frightened - waiting for diagnosis

  1. #211
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    Quote Originally Posted by Corella View Post
    Thanks Terry, sorry for moaning.

    I would like to announce that despite alcohol making me feel nauseous of late, I am at this present moment in time, drinking a glass of red wine, I shall have two glasses and deal with the nausea later, but for now it is a mighty fine muscle relaxant, although why alcohol has started to make me feel sick and dizzy I do not know but it sure works on pain. I am a cheap date though, two glasses and I am anyones.

    Work was awful, this head dragon in the office who has made several people cry, well the office manager told me today that 'everyone is scared of her' and I replied 'I give people respect but cross the line with me and we have a problem and at 43, I am too old to be scared of anybody' - well she and my other colleague looked horrified that I wouldnt be scared of head dragon, so no doubt that will be noted when my trial is up.

    Scared of the possibility of having lupus - yes, scared of losing my marbles and freedom - yes, but scared of a tubby short mobile cat scratch post (she scratches her own face when stressed and reminds me of a cat scratch post), no way.

    Who would like a glass of wine? My treat.
    Hello Sam,

    Yo ah moaning mate, just explaining how you feel...none of we look at one another as moaning.

    All i can say just take the drinking of the wine slowly and drink water in between to keep your system flushed out, i hate water but i have to drink it sometimes in between drinking tea to help my body and organs and it may help the nausea.
    I used to love my whisky but when the SLE started progressing i knocked it on the head as it upset my system bad and i felt like throwing it and i thought to myself i'd rather do without but in my eyes everyone to their own...i enjoy a fag and that alone helps me cope.

    Good job your married mate if your anyones after 2 glasses that's the best i've heard.lol

    You always get one in an office or anywhere really and i should think at 43 it wow bother you and also stand up for yourself because at our age we're abit hold in the tooth for that nonsense.

    That's what i was pointing out when you mentioned knowing if you had an A1 Disease Lupus ah fun for any of we and if it comes you don't have it count yourself lucky and overjoyed as i would be i definitely know that.

    Thanks for the offer on the wine but no thanks mate can't stand the stuff.lol

    You takecare and all my love Terry xxxx

  2. #212
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    Hi everyone

    I had a thought today, I am thinking that perhaps when I see the rheumy in two weeks that my ANA will be re-tested and it will come back
    normal, I am wondering what the chances are.

    And also, with dry eyes/mouth/throat, mine are not dry 24/7, they are dry for a large part if not majority and eating can be difficult but at the moment, my eyes are burning but my mouth isnt that dry - if that makes sense. Does it have to be consistently dry?

    But I am seriously thinking that the next ANA will be negative - although I would like answers obviously.

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    Hi Corella, my dryness comes and goes as does my ANA showing up. Sometimes it takes years for all these symptoms to come together. We often wish it would just be clear so we could deal with it and move on, but it doesn't always work out that way. It's sooo frustrating, but just keep building your symptom case(smile) and know we are here to vent to as you take this journey.

    I would ask for something to treat these symptoms even if they are not present at the time. I use vitamin E for my mouth and nose dryness and sores as recommened by my rheumy. Tammy

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  5. #214
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    Quote Originally Posted by Corella View Post
    Hi everyone

    I had a thought today, I am thinking that perhaps when I see the rheumy in two weeks that my ANA will be re-tested and it will come back
    normal, I am wondering what the chances are.

    And also, with dry eyes/mouth/throat, mine are not dry 24/7, they are dry for a large part if not majority and eating can be difficult but at the moment, my eyes are burning but my mouth isnt that dry - if that makes sense. Does it have to be consistently dry?

    But I am seriously thinking that the next ANA will be negative - although I would like answers obviously.
    Hello Sam,

    With ANA tests it 50/50 mate on what the results can be and i know this lots getting you down and it's a pure waiting game but you know the saying patience is a vertue, even though your going through alot.

    I have sjogrens Sam and my eyes are classed as 6/10 like i've mentioned before and mine get a bitty feeling like there's grit in them, refering my mouth it gets dry quite alot that's why i keep drinking tea and refering my throat certain foods do pain me to get down as my gullet is dry. Refering the symptoms mine are constant refering the mouth and gullet but the eye trouble hits whenever it likes then i have itching and wipe my eyes with baby wipes.

    Your thinking it will be negative because of what happened with the other rheumo but it's according to what tests they do, when i had my first lot with the rheumo he did 12 bloods and the nurse had never heard of two of them and had to ring the lab about them to make sure on what he was testing, it's all down to what's showing and what you tell the rheumo.

    Love Terry xxxxx

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    I dont think I have the fight in me to find another rheumy if this one doesnt work out, the guy I am due to see is the boss of the terrible doctor I saw last time, they are all on the same team.

    To be honest, if this doesnt go to plan I dont think I can wait any longer, I shall just see my GP as any unbearable symptoms arise. You know I fell asleep at my desk today, under the fluoro light that they cannot do anything about (I checked), and what is funny is with my dry mouth, as soon as I drink water, within minutes its even more dry which is rather odd.

    I get a sore scalp as well as though someone is rubbing my hair up the wrong way. But I dont know if I will get chance to go through all my symptoms - I have photos of the face rash after sitting under fluoro lights and a photo of my thighs with the blood blisters on them but thats about it.

    If this chap cannot give me answers then I will live with it I guess because we are not exactly spoiled for choice for doctors in this field in Perth and the thought of waiting years to piece my 'body jigsaw of health' overwhelms me.

    Oh my goodness I cannot wait to find out what is wrong and if the doctor dismisses me, then I shall invent my own name for it all - 'MBIAD' which stands for 'My body is awful disease' so at least I have a name for it (how sad is that!)

    Right, the Vicar of Dibley is on and I am going to make a drink, I have had garlic on toast tonight and I am sure I will scare off the vampires if not my internal organs.

    And if I do get a diagnosis on 27th, then the drinks are on me - well not literally but you know what I mean, although with my recent hand tremors - they could be over you as well.

    Take care everyone.


    Quote Originally Posted by lovedbyHim View Post
    Hi Corella, my dryness comes and goes as does my ANA showing up. Sometimes it takes years for all these symptoms to come together. We often wish it would just be clear so we could deal with it and move on, but it doesn't always work out that way. It's sooo frustrating, but just keep building your symptom case(smile) and know we are here to vent to as you take this journey.

    I would ask for something to treat these symptoms even if they are not present at the time. I use vitamin E for my mouth and nose dryness and sores as recommened by my rheumy. Tammy

  8. #216
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    Quote Originally Posted by Corella View Post
    I dont think I have the fight in me to find another rheumy if this one doesnt work out, the guy I am due to see is the boss of the terrible doctor I saw last time, they are all on the same team.

    To be honest, if this doesnt go to plan I dont think I can wait any longer, I shall just see my GP as any unbearable symptoms arise. You know I fell asleep at my desk today, under the fluoro light that they cannot do anything about (I checked), and what is funny is with my dry mouth, as soon as I drink water, within minutes its even more dry which is rather odd.

    I get a sore scalp as well as though someone is rubbing my hair up the wrong way. But I dont know if I will get chance to go through all my symptoms - I have photos of the face rash after sitting under fluoro lights and a photo of my thighs with the blood blisters on them but thats about it.

    If this chap cannot give me answers then I will live with it I guess because we are not exactly spoiled for choice for doctors in this field in Perth and the thought of waiting years to piece my 'body jigsaw of health' overwhelms me.

    Oh my goodness I cannot wait to find out what is wrong and if the doctor dismisses me, then I shall invent my own name for it all - 'MBIAD' which stands for 'My body is awful disease' so at least I have a name for it (how sad is that!)

    Right, the Vicar of Dibley is on and I am going to make a drink, I have had garlic on toast tonight and I am sure I will scare off the vampires if not my internal organs.

    And if I do get a diagnosis on 27th, then the drinks are on me - well not literally but you know what I mean, although with my recent hand tremors - they could be over you as well.

    Take care everyone.
    Hello Sam,

    This Rheumo may be of the same team but being head of the other, like i mentioned before me may be more thorough incase the otheras slipped up in anyway and he might do more tests in his own acknowledgement to make sure, it does'nt mean they're all the same and i hope he turns out to be great mate...so try not to worry to much just take the appointment as it comes.

    How your mouth keeps going dry as soon as you've drunken anything, that's how mine goes dry again so it's another drink, the only thing i ain't done yet is clued the loo to my backside.

    Sam i've never known you mate on such a downer refering a name for yourself if nothing shows, in all the time i've known you you've never been this bad although you've gone through quite a few symptoms and with the steriod jab...that's a good point you want to state to him ( say why was on i that for then).

    Sam chill out mate and enjoy your night, can't stand that vicar of Dibley...now father ted your talking that was a right laugh with the old man and the stuff he drunk.lol

    Loads of love mate xxxxxxxxxxx

  9. #217
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    Im feeling a bit better today, slept most of it - really behind in college work which is a bit daunting and the tutor said now I have to catch up and quickly as I have had all the extensions I can have.

    My clothes are falling off me yet my weight is the same, my trousers can come off without being undone yet I still weight 12stone, I wonder if I have lost muscle? My wedding rings no longer fit me either, its all very strange. I still have big boobs though, although not half as big but still a good size so that is one thing.

    Just got back from the vet with my cat who weighs in at 7.6kgs, so he is on a diet (he chewed my blouse last night as I was late with his food!)

    You know what I think it is, I think it is not knowing what I am fighting and believe once I know what it is then I can tackle it. I had today off as a rostered day off which makes a huge difference when you can sleep, I wish I didnt have to work the hours I do - we have done the lottery for this week as it is a big payout - you never know, we could win.

    Its strange how you dont want Lupus or any AI disease but you need a diagnosis so you can move forward, its like a war going on in our bodies and we have no control over it.

    My husband is cooking tea tonight, so I am looking forward to that and I might manage a glass. I have an editing course at college tomorrow which should be good but I am going to try to not worry about being behind with my course, my brain fog is awful at the moment and I have bigger things to think about, I will just do my best.

    I wish I could meet you all for a drink, can you imagine the fun we would have.




    Quote Originally Posted by Peridot20_Gem View Post
    Hello Sam,

    This Rheumo may be of the same team but being head of the other, like i mentioned before me may be more thorough incase the otheras slipped up in anyway and he might do more tests in his own acknowledgement to make sure, it does'nt mean they're all the same and i hope he turns out to be great mate...so try not to worry to much just take the appointment as it comes.

    How your mouth keeps going dry as soon as you've drunken anything, that's how mine goes dry again so it's another drink, the only thing i ain't done yet is clued the loo to my backside.

    Sam i've never known you mate on such a downer refering a name for yourself if nothing shows, in all the time i've known you you've never been this bad although you've gone through quite a few symptoms and with the steriod jab...that's a good point you want to state to him ( say why was on i that for then).

    Sam chill out mate and enjoy your night, can't stand that vicar of Dibley...now father ted your talking that was a right laugh with the old man and the stuff he drunk.lol

    Loads of love mate xxxxxxxxxxx

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  11. #218
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    Quote Originally Posted by Corella View Post
    Im feeling a bit better today, slept most of it - really behind in college work which is a bit daunting and the tutor said now I have to catch up and quickly as I have had all the extensions I can have.

    My clothes are falling off me yet my weight is the same, my trousers can come off without being undone yet I still weight 12stone, I wonder if I have lost muscle? My wedding rings no longer fit me either, its all very strange. I still have big boobs though, although not half as big but still a good size so that is one thing.

    Just got back from the vet with my cat who weighs in at 7.6kgs, so he is on a diet (he chewed my blouse last night as I was late with his food!)

    You know what I think it is, I think it is not knowing what I am fighting and believe once I know what it is then I can tackle it. I had today off as a rostered day off which makes a huge difference when you can sleep, I wish I didnt have to work the hours I do - we have done the lottery for this week as it is a big payout - you never know, we could win.

    Its strange how you dont want Lupus or any AI disease but you need a diagnosis so you can move forward, its like a war going on in our bodies and we have no control over it.

    My husband is cooking tea tonight, so I am looking forward to that and I might manage a glass. I have an editing course at college tomorrow which should be good but I am going to try to not worry about being behind with my course, my brain fog is awful at the moment and I have bigger things to think about, I will just do my best.

    I wish I could meet you all for a drink, can you imagine the fun we would have.
    Hello Sam,

    Glad to hear you feel better today mate, you was proberly on a downer yesterday and we all have them.

    That's going to ware you out now fully concentrating on catching up with your college work.

    Ah sam dow get moaning mate if your clothes are coming off you, even if you still weigh 12st i thought you wanted to lose weight, it may be the worrying your doing over seeing this rheumo and besides you having the odd drop of wine are you eating ok also mate because that can make some people lose weight besides.

    Oh bless your cats on a diet and i've never known that before chewing clothes and i've had cats and never had that...stop forgetting then and get you cat done on a regular time (wink) lol

    Enjoy your meal with your hubby mate and Lupus i surpose can be a nightmare not knowing because when i was sent to my Rheumo to start from he done 12 bloods besides other's wrote a letter to my GP and everything in my signature showed up from my bloods straight away except for the anaemia, so i surpose i was one of the lucky ones.

    Relax and enjoy your day and have a lovely weekend mate.

    Love Terry xxxxx

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