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Thread: Feeling a bit frightened - waiting for diagnosis

  1. #11
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    Corella,
    Your welcome because we're all in the same boat but your wondering why not a facial rash because it can creep up on you out the blue, i was ok before we moved area's 4yrs ago and 2wks after moving full blister's broke out on my face and the neighbours said it could have been the worry of moving, then when that moved i had a rash develope all over my body that was identical to ring worm but not pronounced and in the end my GP sent me to a Dermo and told me i had ezcema, took bloods and when i saw him again he told me i had inheditery psoriasis, then the next year a full blown pain in my right elbow, apparentley that was a tennis elbow and one night i'm sitting and full pain in my left hip with shooting pain, my hubby thought it might be sciatica was it hell, it was all this lot and in 3yrs it's progressed like mad i'm 43 coming on 90 that's how it makes me feel.
    When i told you to come on and type your feeling's because depression is the main kick off for Lupus or any immune diseases, well me being a manic depression does'nt help.
    Your being send to a immunologist is because they deal with immune disorders, i'll add some info on what they do in abit to help you because it's all about helping one another.

    Watch the sun though because it will affect your body and if i'm out in it for roughly 10mins i go like you feel bad headaches, sickness but i've learnt my lesson's with to many out breaks on the skin the shades the best for just a limited amount of time.

    Well i had loads of bloods done plus x-rays and i was glad to know what i was suffering before that my head was all over the place and refering your hubby if your in an happy marriage like me, my hubby does more now and i used to think i was doing his head in constantley on about it but he told me the other day i just wished i could take it from you that's what hurts but he's told me to chat away and the member's will understand best thing i did joining WHL.

    Your sentences will sound backwards, you speech can go slurred it all comes from the foggyness of the brain and while typing this i'm having to check my spelling it's pure MADNESS what it does to you.

    Terri xxx
    Last edited by Peridot20_Gem; 04-26-2011 at 04:35 AM.

  2. #12
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    Corella what a clinical immunologist does.

    A clinical immunologist is a person trained to research and investigate the immune system to diagnose and treat patients. A clinical immunologist investigates, diagnoses, and treats allergies, autoimmune problems, deficiencies of the immune system, and the suppression of the immune system. Additionally, some clinical immunologists may dedicate a good deal of their time to teaching others.

    Typically, a clinical immunologist works to investigate, diagnose, and treat people who have allergies. For example, a person with this title may deal with people who have food or drug allergies as well as those who are allergic to animals and insect stings. A person with this title may also deal with patients who have hives, asthma, or conditions such as eczema. The types of allergic conditions a clinical immunologist handles may range from minor conditions such as hay fever to such major reactions as anaphylaxis, which is a life-threatening allergic reaction.

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    Corella (04-26-2011)

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    Thank you so much for the info, I spoke to someone from our local Lupus group who advised one of the doctors would be better to see than the other in her opinion so I will probably go with him and apparently the hospital has good facilities, it just means waiting till July or sooner if they get a cancellation.

    So much is falling into place with symptoms though it really is. My hairdresser commented on an abnormal amount of hair fallout when she did my hair, I have a lot of hair and take Biotin for it anyway as it seems healthier and although its thinning on top, I cannot see bald patches and fingers crossed I wont.

    I feel so sick in the sun, I swim almost completely covered up and even in winter I wear a total sunblock. This summer has been hell pain wise.

    I do not tolerate steroids, I was on them for nearly 4 years continuous with asthma and I only have to be on them a week and I get violent mood swings, my body aches, I get moon face, I can stay awake for 4 days with no sleep and doctors agreed they are not for me.

    I find Mersyndol which contains a muscle relaxant is good for the pain, it has paracetamol and codeine as well, I usually take 2 a day, missing some days out but cannot take anything stronger but sometimes they dont even touch the pain.

    The hip pain is awful, it feels 'dry' and hurts to walk, the symptoms are so non specific its hard to pin point but coming on this site its a case of 'Oh I have that' and I dont feel so isolated.

    Its annoying as my life is going well, I like my job but struggle in it, I go to college, we dont have a lot of money but we do OK and I cannot believe I am this sick.

    And another thing I have remembered, sometimes my eye looks droopy and I have a tremor in my left arm that my GP picked up, god knows where that came from.

    At the moment as I dont know what is wrong, I wake up each morning happy and then it hits me like a hammer, that all is not well and before I even had these blood tests I knew something was wrong with me.

    I wonder if they will do another ANA test and if it comes back normal, will they dismiss me?

  5. #14
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    Corella,

    I know you've got to wait for a cancellation but i've been reading more on the specialist you've got to see, they cover the fields of everything Lupus, autoimmune diseases the lot, i know it's hard but you may get somewhere with it, so your being sent for some reason.

    Don't talk about the hair mate.lol my hair was down my back woke one morning and went to tie it back and a right bald patch on my right side so i shaved my head onto grade 1 and i had a 50p bald patch ontop it's grown back but grey now and i keep my hair in a short bob but when i shower there's so much come out, i'm lucky i have such thick hair but i just keep to Elvive shampoo and conditioner.

    I've had steroids in the past i got the mood swings like you but my skin went terrible and doctor's gave me wrong meds besides and gave me brain damage to the right side of my head, then i was under a brain surgeon but he could'nt help, i've been on plaquenil for 12wks it suites some and not other's i'm in the catergory i have been bad with it besides pain.
    So i'm seeing the doctor this afternoon and telling her as she's standing in for my normal doctor i'm coming off it and i'll stick to my 4000mg of paracetamol a day.

    The Tremors i used to have but not so much now, it's to do with your nerves and also panic attacks that go along way to do with it, they've got me on Frisium to help mine and my nerves besides helping my seizures also.

    If they do another ANA test and it comes back negative they really can't dismiss it because like i said Lupus and autoimmune diseases play mad with the blood and give wrong reading's off, i've had anaemia in the past really bad and last year while bloods was being took by the rheumo and my GP the bloods kept coming back ok for the anaemia but i was low like i had it before and one saturday a letter dropped through the door off the hospital i had anaemia again and i'm on folic tablets and B12 Jabs for life now and it took them 6mths in total to get a correct reading, the Lupus can be a nightmare and so many member's have been in the same position, it's a pure waiting game.

    Terri xxx
    Last edited by Peridot20_Gem; 04-26-2011 at 06:03 AM.

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    I wonder if I will definitely lose my hair? It's like a toilet brush as it's so thick, I am dropping an awful lot but I am rarely out without a hat, I even have the darkest legal tint on my windows of my car to limit sun exposure. When my husband was on warfarin, he was losing his hair and was advised to take Biotin which stopped it, we both take it, it's for hair and nails but god knows how it works.

    I will cry if I lose my hair as I'll look like a man with boobs - seriously I have a fat face at the best of times. I wonder if that happens to many sufferers?

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    Hi Corella,

    My Mother has been living with Lupus for over 20 years, and she only recently started having some permanent hair loss. Some of that may also be simply age related. She's 75. She went for nearly two decades with very little hair loss. And that which she did lose, grew back.

    In regards to having a rash on the face with Lupus, I've been living with lupus for 7 years and I've never had a rash on my face, not even once. Other people, including my mom, get the telltale butterfly rash all the time. Lupus is a strange disease, it affects everyone differently.

    I had to laugh at your boobs comment. I'm a guy, and right after my diagnosis I was put on steroids which caused me to gain a lot of weight in some very strange places-I looked in the mirror one day and discovered that I literally was a man with boobs! Fortunately, I got off the steroids and managed to lose all the weight I had put on, including the temporary "man-boobs".

    Rob

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    tgal (04-27-2011)

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    Corella,

    Robs just made me laugh about the boob job ( come on rob what size bra do you take)lol

    Well i don't know if you'll loose your hair completely but if you do it's wig job, you've got to laugh about it as a good many of us have because with Lupus you don't know what's around the corner.
    Well i was on wulfrin for DVT and i know i stuck a stone on in a week but i never knew about losing your hair, at the mo i'm ok they said as no clots are showing at the moment but a couple of member's have mentioned their face's getting bigger either with medication or naturally.

  10. #18
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    Well I spoke to one of the clinic administrators and I am now on 2 cancellation lists, so if a cancellation pops up and I can get to the clinic at short notice, that is what I will do - whoever turns up first. I need to know, its the not knowing that is upsetting me.

    And another thing, my left arm has a tremor that is bad on/off, dont know what that is all about but today I felt very weak indeed. On the plus side, although my eye isnt as dry as it has been - providing there are no cooking smells in the house and then it streams, it does sting for no reason but that is often better than it being dry.

    My body is having a party and a fight and I am not invited to it and I dont like it one bit, I half expect my body to advertise the party on Facebook and there will be one massive fight with my organs. Does anyone else ever feel like that?

  11. #19
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    Hello corella,

    Well at least your on two cancellation lists now and i was like you could'nt wait for results because when your in so much pain and discomfort and can't get no proper answer's, you start guessing it's this and that so i understand where your coming from.

    I hope you get there sooner to see someone because besides taking bloods you need a nerve test also, they've done several on me and some of my nerves are damaged and dry eyes comes with the sjogren's disease i have that, it's a terrible disease and works so hard in your system especially if the Lupus is fighting with it also.

    I feel like you say with your body having a party and a good many on here, if i've not got rashes going mad, there's shooting pain from one joint to another besides lung pain and i get hard shooting pains through my organs besides spasms and those are murder besides being cramped up, like i said i'm coming 43 this year and i'm more like someone 90 in the body. PURE MADNESS

    Corella your not on your own mate with this lot. xxx
    Last edited by Peridot20_Gem; 04-27-2011 at 06:39 AM.

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    Hi Corrella,

    I am so glad that you were able to get on the cancellation lists! That is wonderful news. I do hope everything goes well at the doctor and that you get the answers that you are looking for. Please keep us posted. I will keep you in my thoughts
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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