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Thread: Waiting for diagnosis

  1. #121
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    PS - will the fact that I'm on max dose anti inflams have affected the results?

  2. #122
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    Hi Sara,
    I think that that will affect the ESR and a couple of the other tests. Maybe someone else would know more and they will post.

    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.

  3. #123
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    Thanks Kathy - I'm thinking that even though the GP thinks these results are normal perhaps the rheumatologist will put these slightly raised levels together with the other stuff and come to a conclusion. My lungs have cleared up with the anti inflams and I just think it must have collapsed for a reason because I haven't had a cold for about six months. Also the rash is sore on my painful thumb so that must be connected to the pain I think but the rheumy and GP don't think it's connected - frustrating isn't it? My thigh pain comes and goes and when it's bad I limp badly - thing is it comes and goes within a 24 hour period! I think it could be myositis - have to wait for the MRI result I guess - if that's normal then I don't know what to do next really. The rheumy will want to do the electric needle thingy and muscle biopsy yuk! Thing is if it's only in early stages then I want to kick it in the head right now and not wait until it gets worse before they do anything. I want my life back!!!!!

    Sorry to moan Kathy - hope you are feeling good today?

    Sarax

  4. #124
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    Hi Sara,
    I am sorry that you are having so many problems. I don't think that you are moaning at all. There is something really wrong and you do not feel well. I think that the Rheumatologist will take into consideration about the test results and the fact that you are actively on anti-inflamatory medications. A person's lungs do not just collapse for no reason at all. You could have had Pleuresy that caused the lung to collapse and that is seen in Lupus sometimes. I hope that the Rheumatologist can figure out what is happening and treat you and get you better. I have had the pin test and the electrode test done to test for Neuropathy in my legs and it was not that bad to go through. It sounds worse then it is. I never had a muscle biopsy done, but I am pretty sure that they numb the area up so that you will not be to uncomfortable. Sara I sure hope that they can figure out what is happening. I will have you in my prayers and let us all know what the results of the MRI are ok. Please keep posting and I will try to help as best that I can 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.

  5. #125
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    hey there,
    I can relate to a lot of your symptoms (mouth ulcers, feeling ill, fatigue, joint pain and inflammation) and I know how awful you can feel. The thing about Lupus is it's such a hard disease to diagnosis because it has so many common symptoms with other diseases (as people have told you). My advice to you is to ask your rheumatologist whatever questions you may have and to always be open with him/her.
    Keep your head up...the road may seem long but it does get easier.
    Kat

  6. #126
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    Thanks girls

    I checked the copy of my results and the GP obviously only glanced through them because there are about 40 of them! Two other things were flagged up- one high and one low - and I have Googled them and they are indicators of inflammatory or muscle wasting diseases such as Myositis and Muscular Dystrophy.

    I am guessing you are in USA so hope you are sleeping well both of you. I'm just taking the kids off to school then myself off to work.

    I hope your new Pres serves you well.

    Saraxx

  7. #127
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    Hey Sara,
    How are you doing? I haven't heard from you in a couple of days, thought I would check in. Are you feeling any better than you were a couple of days ago? When is your rheumy visit?
    Robyn
    live, love and laugh often.

  8. #128
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    Hi Robyn

    How're things with you? I'm in so much pain today I don't know where to put myself. I can't just carry on waiting for the docs to make a decision in their own time - I'm going to make an appointment to see my GP and tell him to get me back to the Rheumy ASAP. I have to be proactive - I want my life back now! All I do is work and come home to bed - it's miserable!

    A year ago I used to wear my pedometre and make sure I did 10 miles a day - now I struggle to make the stairs some nights. This is riddiculous - I'm 45 and I feel as though I'm disabled without even knowing why! I had another look at the blood results I insisted I got from the GP and they are old ones that he sent me for not the most recent that the Rhuemy had done so I'm none the wiser.

    The rain is coming down in torrents here tonight - bonfire weekend has been a washout for families with little kiddies - such a shame.

    What have you been up to this weekend - tell me you've been doing something nice to cheer me up Hope your aches and pains have not been too bad.

    Off to bed now - the back of my thigh is too painful to sit any longer - need to lie down.

    Sarax

  9. #129
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    Hi Sara,
    I am sorry to hear that you are having such a terrible time. It is not right that the doctors do not want to listen to the patient and work their hardest to figure out just what is going on. I don't blame you for demanding to see a Rheumatologist asap. Everyone has the right to feel well and to find out what is going wrong with them when they are ill. I hope that you can get in to see the Rheumatologist and that the Rheumatologist can sort out what is happening with you and have some answers for you.

    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.

  10. #130
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    Hey Sara, there you are. I was worried about you. Great Idea. Call the GP and tell him to get moving.
    I have had it kinda rough with my hands hurting the past few days and today I am just exhausted and achy all over. But I have stayed in pjs and did mostly nothing all day. It was wonderful.
    Yesterday, my hubby and I went to the city (Indianapolis) to a wedding reception. A nice fancy brunch. It was almost like a date.
    We left the kids at home, so it was just the two of us. Then yesterday evening, all of us went to dinner with my nephew and his wife and their 3 month old baby.
    Sorry about the rain, that just makes you feel even more yucky.
    Talk to you soon,
    Robyn
    live, love and laugh often.

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