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Thread: Waiting for diagnosis

  1. #111
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Good morning all,

    Had a good time Halloween. Lots of kids, and adults milling around. Everyone finished up their activities early thankfully. Steve's house was pretty cool, as usual. I think he's out of town. My sister and her husband know him better than I do. Brother in law has been friends with him since they were kids. Many of his books take place in the fictional town of Derry, Maine. Many of the movies made from his books are filmed here, and my sister got to be an extra in the movie Pet Sematary. She was a nurse/EMT in the movie for about 30 seconds. She had great fun. My favorite book of his was the series The Green Mile, which wasn't a horror story at all. Actually, the best movies have been based on his non- horror books. Shawshank Redemption, Stand by Me, The Green Mile, and Hearts in Atlantis were great movies.

    Didn't go flying yesterday, too windy. R/C planes, and to a larger extent, R/C Helicopters can be quite dangerous if they get away from you, so flying in bad conditions can be an accident waiting to happen. The blades on the heli are 5 feet from tip to tip, and will remove fingers, hands, whatever they hit if you lose control.

    I know how you feel Sara about wanting a name for what is causing your symptoms. I certainly didn't want SLE, and MS. But I couldn't fight the enemy without first knowing what I'm fighting.

    How are you feeling Coltsfan? Did you end up getting any of that good weather you mentioned?

    I've always wondered what the difference is between cat lovers and dog lovers. Both of my sisters are dog lovers. Personality wise, one sister is a quiet introvert, the other is an in your face outspoken type, and I'm told I'm an extrovert, life of the party type, or at least I used to be. My parents are cat lovers and Dad is a party animal and Mom is a tea-totaler. Go figure. For me, the dog thing is related to two dogs that attacked me when I was a kid. I don't have a phobia, but I'm wary of dogs, and always will be. I just love cats. I find them facinating. My three cats have personalities that are very individual. Some people see cats as aloof, but I find most cats to be very social and affectionate.

    Well, gotta go scrounge up some breakfast. have a good day all.

    Rob

  2. #112
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    Well you are really educating us now Rob - I never knew Green Mile was an SK book or that Shawshank was based on one of his either! Green Mile is the one with the black guy in prison who has special healing powers isn't it? I've just finished Wise Woman by P Gregory so I'm off to bed to start another one - doing a book swap with my daughter.

    My dog is suffering at the moment due to all the fireworks that go off here around 5th November for Guy Fawkes Night - she's petrified poor thing. We are trying to be very positive and upbeat with her to give her good energy - it seems to be working quite well. You would be cured of your wariness by her Rob - she's a very special dog. She is very kind and gentle - once when my girls were messing around doing press-ups the dog thought that the eldest couldn't get up off the floor and she put her body underneath her and tried to lift her up. Another time when I was linking my hands for my youngest to stand on to reach something off the top of the cupboard Jazz put her head under my hands and tried to help lift her up She is very tuned in to how people are feeling and although she is a shy reserved little dog she always tries to help us. I think I told you before that we rescued her from a dogs' home to help my daughter walk after her acident - I think she was sent to us as a Guardian Angel because she has brought us all much closer together.

    You are so lucky to have family around you - it sounds such fun. You too Robyn - I love the sound of your Christmas day. I really wish I had lots of family. I have a sister that I am not close to and I used to have a brother but he died a few years ago - he was only 42. Hubby is one of 6 but they are scattered around the globe - MSN is a wonderful thing though. One year we all gathered in Pakistan - it was brilliant! We have 2 kids each now so it would be fantastic if we could all get together again.

    I'm going to try and get some rest now because I start my new role as assistant manager of the learning centre tomorrow and I've had a bad weekend as far as pain is concerened. Maybe my letter from the hospital will come tomorrow and all will be revealed :roll:

    Night night friends

    Sarax

  3. #113
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    Hey Rob,
    Yes, we had a wonderful weekend weatherwise. Sunny and 70 both days. Supposed to be like that on Monday and Tuesday also, but then the bottom falls out and snow by Saturday. I did a whole lot of nothing this weekend. Hips and knees feel a little better, but hands and elbows still yucky.
    My dad likes to fly the R/C planes as well. He is all the time out in the garage putting them together (or back together) and fine tuning. That is a HUGE helicopter. Bet it is pretty cool when you finally get the hang of it though.
    Sara, I hope your test results come in soon. It will be a relief to have a name to put to it. Even better if you really could use chocolate as the meds. Poor puppy. My dog really hates fireworks too. And anything with wheels on it, unless he is in it. Barks like crazy at my sons bicycle. Give her a good scratch behind the ears for me.
    Gotta run, have to go to work. Talk soon, Robyn
    live, love and laugh often.

  4. #114
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    Dear agony aunt and uncle

    OK I really need advice here folks - just called the DR and receptionist said that my notes say tell patient blood tests normal :shock: Still waiting for the MRI results but where the heck do I go from here because I am really struggling with the pain. It's weird because earlier today I was limping due to thigh pain and now I'm not - last night I was in excrutiating pain with my hand and could hardly use it but now it's not too bad (still can't use it properly but that feels like the normal state of affairs these days). I feel really confused - am I sick or not???? I know the pain is very very real but what if they don't find anything??? Does that mean I'm exaggerating it in my head??? I don't get it!!! AAArrrgghhhhh! I've really tried to push myself into being well but it's not working so far so I don't think I'm being self-indulgent. What shall I do now? Do I just wait for the Rheumatologist appt in a couple of months? I've asked if my GP can give me a call after surgery so I can ask him what I should do and I've asked for a copy of the results too - do I need them or should I accept that they should know if they are normal or not? It's not normal practice here to be given your blood results.

    I think I'm sounding as though I'm wishing something bad on myself - I do want to be well but not sure how to be if this is 'normal'!

    Sarax

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    Hi Sara,
    I don't think that your illness is all in your head. There are folks with Lupus that are Sero-negative and it does not show up in the blood. I think that you have a right to request all of your lab results to take to the Rheumatologist with you. You should also right down everything that you can think of all your life and let the Rheumatologist know. I know I did that and that is how he pretty much pinned it down to the age or either 5 or 7 years old. There are other folks that come in here that are sero-negative. I am not one of them, but there are definitely some that are. I hope one of them comes on and posts. Let us know how your MRI goes ok.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Thanks Kathy - I'll keep you posted.

    xx

  7. #117
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    Sara,
    I agree with Kathy, get everything they will let you walk out with. Something is going on that is causing you so much pain, maybe the rheumotologist can figure it out as he/she is more specialized.
    Keep your chin up ole girl. They will get to the bottom of it. Hopefully your GP will call soon and elaborate further. I hate when the nurse says the chart looks good. I want more details.
    How is puppy today? Over the scare of the fireworks now?
    Hubby have a good birthday? Did he get lots of presents?
    live, love and laugh often.

  8. #118
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    Jazz and hubby both happy puppies not so many fireworks this year which is odd - maybe folks not wanting to waste money this year. Pups coping brilliantly with the few bangs and whooshes that there have been so far.

    Rhuematologist must have sent results to the GP so he must have said they are fine :roll: Wonder what the MRI scan will show up.

    Thinking back over last 4 months symptoms:[/list]
    muscle pain - bloods showed inflammation (are these now clear because of the high dose anti-inflams?)
    muscle spasms in back (diazapan worked wonders)
    pain in thumb (sounds daft but this has been the worst pain)
    partially collapsed lung (better now)
    hand rash (worst on sore thumb)
    mouth ulcers
    cold sore (horrid - can't play my clarinet)
    disturbed sleep
    oooohhhh soooo tired!!!!

    Poor me :roll: What a moaner - getting on my own nerves now

    Saraxx

  9. #119
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    Hey Sara,
    I was just thinking about you and wondering how you were doing today? Any relief yet? Last night, my daughter made a pan of really rich and chocolatey brownies. I thought about you and wished I could send you one to smother your pain with. Since I couldn't, here is the wish of gooey chocolate for you..... Yummy, don't you think.
    Robyn
    live, love and laugh often.

  10. #120
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    Yum yum Robyn - I love comfort food.

    Just collected 'normal' blood results

    ESR 22 ? Mild inflammation?

    Rheumatoid factor - 0.01 ? borderline Dr says?

    got hundreds of other results here but they are the only ones he has written a note on - any ideas what I should be looking for

    XX

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