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Thread: Not exactly what I wanted for christmas

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    Default Not exactly what I wanted for christmas

    Hello

    following the great combination of a miscarriage, a sunny holiday and a lot of stress I've been off work for the last four months with an increasing range of problems that I didn't have previously - including breathing problems chest pain, pins and needles, joint pain, anaemia and and interesting facial rash and getting increasingly frustrated with the medical profession while they try to work out what is wrong.

    Despite the fact I have a close relative with Lupus/ MCTD and Hughes syndrome, a history of autoimmune problems in the family and an ever growing list of symptoms that get longer each visit to my doctor I've had to fight to be listened to and to get a referral to a specialist.

    I've been told everything from its depression - when I don't feel depressed ( I had to get my husband to come along and say I live with the woman and she's not depressed before the GP would listen), when I couldn't breathe and had chest pain - before they looked at an x ray it was suggested that may be you are hyperventilating from stress, 'its a virus' when the fatigue was enough to knock me out, 'its carpal tunnel '- when I started with tendonitis, and my favourite from a haemotologist who tried to work out why I had anaemia, B12 deficiency 'I haven't a clue what's wrong' :roll:

    I can tick all the boxes on trigger and risk factors and the inital blood tests, symptoms, family and medical history all indicate an autoimmune problem and even my GP has finally asked is it SLE and arranged for me to see a rheumatologist after christmas (good job it wasn't anything to serious......)- but will anyone call it .... well not yet so I'm here looking for information and a little support while they work it out

    ainting:

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    Welcome snowbear

    You've found a great support site here. I'm not diagnosed .... not sure if I ever will be at this point.

    I'm 48 yr old female. My mother had lupus and my sister has been diagnosed. I've had rashes and other symptoms since I was in my late teens, but no one ever thought to check me back then.

    I've had a couple of possitive ANA tests and a couple of negative over the past few years.

    It's very frustrating to try and get the doctor's to listen let alone do anything.

    Best thing I can say, is get stubborn, keep at them, keep going back. Once a week or twice a week. Specially when you are in pain.

    For me it was the swelling...I was going twice a week begging for them to find out what was wrong and to do something about it.

    I'm now on a combination of arthrotec 75 and plaquenil, which is working well for me.

    I'm sure the others will be along soon to add their welcomes...

    Glad you found us.
    Oh look ... a cookie

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    Hi and welcome!!

    Oh i am so glad you found this site. I am so sorry to hear of all your terrible heartache and the ignorance and stress you have been through and are still going through. I am also new to this site and totally understand the frustration you have to go through on a daily basis. I am was diagnosed with a nervous breakdown.....then when that went on too long they called it ME....then derpression.....now Lupus, but awaiting blood work. You need to know ''YOU ARE NOT ALONE!''. I am so happy you found us here as all the people here fully understand, are loving, supportive and will help you with any questions i am sure. Im sure you will meet lots of people who will help here. You keep as strong as possible and take one day at a time.My name is Angel and i understand.xx

    Love
    Angel.xxxx

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    thanks

    I'm glad to find you. After weeks of feeling ill and miserable and going through complete shock and every emotion under the sun i'm finally getting my head around things.

    The irony is not lost that the one time when I really needed a doctor to look after me and be supportive I've had to argue my corner and be pushy to the point I feel exhausted just dealing with the medics and I know I've not got too far yet. The worst thing at the moment is my brain is foggy - I can't remember half of what I need to. I phoned up my sister this morning and asked if it was 'normal' to put the cornflakes in the fridge.

    My sister has just been through 4 years of exactly the same diagnostic fun and games so its a familiar path. She's currently being treated by a rheumetologist for a condition that last year he told her she didn't have and is completely exasperated by it all. I just didn't think a few weeks ago I'd find myself walking the same road.
    love
    SBear
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

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    My sister had just had her 5th miscarriage when they finally diagnosed her with lupus. My mom passed away before my sister was diagnosed.

    She now has two healthy happy teenage boys. She's been in remission for many years, and I hope it continues for her.

    I think every one deals with brain fog ... lol caught my husband pouring pepsi in his coffee the other morning...yuck.
    Oh look ... a cookie

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    Quote Originally Posted by sits_inthe_corner
    caught my husband pouring pepsi in his coffee the other morning...yuck.
    Mmmm tasty - I was thinking of starting the alternative lupus recipe book for all those not so yummy accidental cooking mistakes I've made lately
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Snowbear,

    Why is it that the default position of Dr's and Rheumo's in this situation is always "Oh, You're Just Depressed"? These people are supposed to be intelligent, but in my case, I'm the one who ended up doing all the reading and research in order to obtain a diagnosis. Intellectual laziness is the only thing I can think of for it being this way. And last I checked, it took a Psychiatrist/Mental Health specialist to diagnose someone with depression, not an M.D. or Rheumo. Sorry, I tend to grab a soapbox and rant when this subject is brought up.

    This is a road you don't want to be on, I know. But look at the positive side, you are taking control and being an educated and assertive patient. That can be really tough for alot of people to do. You need to be an advocate for yourself, and it sounds like you are doing that very well.

    Cornflakes in the fridge, too funny. We had a thread a few months back about all the goofy mistakes "lupus fog" can cause us to make. I actually got up one morning and grabbed what I thought was toothpaste and proceeded to brush my teeth. It tasted awful, and I realized that I was brushing my teeth with Preparation-H. Granted, Prep-H and toothpaste are both useful items, but they are hardly interchangeable. Sometimes, you just have to laugh. Whenever I can't find my capn' crunch or ritz crackers, I just automatically look in the fridge. I once put a bottle of windex in the freezer. Fog can be terrible, but it can also be funny sometimes. BTW, welcome to the group!

    Rob

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    Quote Originally Posted by rob
    Hi Snowbear,

    Why is it that the default position of Dr's and Rheumo's in this situation is always "Oh, You're Just Depressed"? These people are supposed to be intelligent, but in my case, I'm the one who ended up doing all the reading and research in order to obtain a diagnosis. Intellectual laziness is the only thing I can think of for it being this way. And last I checked, it took a Psychiatrist/Mental Health specialist to diagnose someone with depression, not an M.D. or Rheumo. Sorry, I tend to grab a soapbox and rant when this subject is brought up.

    This is a road you don't want to be on, I know. But look at the positive side, you are taking control and being an educated and assertive patient. That can be really tough for alot of people to do. You need to be an advocate for yourself, and it sounds like you are doing that very well.

    Cornflakes in the fridge, too funny. We had a thread a few months back about all the goofy mistakes "lupus fog" can cause us to make. I actually got up one morning and grabbed what I thought was toothpaste and proceeded to brush my teeth. It tasted awful, and I realized that I was brushing my teeth with Preparation-H. Granted, Prep-H and toothpaste are both useful items, but they are hardly interchangeable. Sometimes, you just have to laugh. Whenever I can't find my capn' crunch or ritz crackers, I just automatically look in the fridge. I once put a bottle of windex in the freezer. Fog can be terrible, but it can also be funny sometimes. BTW, welcome to the group!

    Rob
    Hello Rob

    my sister is a clinical psychologist- she was outraged when the GP tried to class it as depression and she certainly is qualified to judge. I don't think i can post exactly what she said as it would violate the terms of service but its summerised as get a second opinion and a new doctor.

    You have no idea how good it is to hear I'm not the only one. I am 40 years old and suddenly I can't remember names of friends, I thought I had another 30 years before I had to worry about forgetting to change out of my slippers before going shopping :silly: but I'm learning the value of post it notes and not to get to frustrated with myself when I forget why I went upstairs for the third time in a row. I tell myself the exercise is always a good way to lose weight and take the pressure off sore joints .

    sbear
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

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    Dear Snowbear:

    I'm glad to know I am not the only one who has concocted "yummy" lupus recipes. They are usually lacking an ingredient or two that should have been added, but occasionally they have baking soda for baking powder or some other substitution that doesn't mix with the recipe.
    The garbage disposal has eaten them more than once.

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    Hi Snowbear;
    I see that you are being well taken care of here by our members. I just wanted to pop in and add my welcome to those you've already received.
    I had to chuckle about your "post-it" notes as I've gotten to the point where they don't always work for me! I have to program things in my computer and on my phone, write them on a calendar and post them on my mirror (all of this for ONE thing that I need to remember). So, don't feel alone with your memory issues. I've gotten up, gotten dressed, gone out to my car and then, I have completely forgotten where I was going. I've sat in my care for 10-15 minutes trying to remember. Finally, I go back in the house. Sometimes I remember, but more often than not, it never comes back to me! :lol:
    Welcome to our family. I am glad that your husband and your sister are there for you to help you to be aggressive with your doctors and to make sure that you are listened to and treated appropriately.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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