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    Default Waiting for diagnosis

    Hi all, I am awaiting diagnosis for my 'illness' and don't know what it is yet - maybe Lupus or maybe Myositis. Does anyone recognise these sypmtoms please:
    Mouth ulcers and painful hand rash for a month or so then went (almost - tips of fingers still have painful red dots) also had headache at that time and felt generally ill. Next had muscle spasms in back which made me shout out in pain - very bad at night.Now, three months on, have muscle pain in legs and back sometimes arms and always in left base of thumb - very painful! Chest xray shows partially collapsed right lung. Tend to get worse as the day wears on and very very tired and feeling a bit fed up.

    Ring any bells with anyone?
    I know you can't diagnose for me but would like to gather info if I can before going back to rheumatologist.[/list]

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

    Some of your symptoms do ring a bell with me. I was diagnosed with Lupus in 2004. The mouth ulcers, rash, headache, and muscle spasms are symptoms I deal with constantly. The general feeling of being ill, is something I deal with every day as well. As for the lung problems, that's not a symptom or a subject I have any experience with personally.

    Lupus is notoriously hard to diagnose, and there are many other diseases which have many of the same symptoms. Lupus is often referred to as "The Great Imitator". You are doing the right thing by preparing for your next rheumotologist appt. An informed patient is much better at articulating their symptoms to the rheumotologist than someone who's in the dark about the subject.

    Please, make yourself at home, and welcome to the group.

    Rob

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    Thanks Rob, I've also posted on a myositis forum too so that I can gather as much info as poss from people who know the most about it. Starting to look like a hyperchondriac aren't I? Daren't post anywhere else in case this all turns out to be a storm in a tea cup - they'll be locking me up :roll:

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hey there Sara,

    First and foremost, you do not sound like a hypochondriac to me. And if anyone tries to tell you that you are, IGNORE them. I hope that what's happening to you is indeed "a storm in a teacup", none of us want to see another person diagnosed with Lupus, or any other disease. But that does not change the fact that you are having real symptoms. Those real symptoms have a real cause, and you need answers.

    I was told that I was a hypochondriac. Yet, I knew there was something happening to my body that was not right. You believe that there is something "not quite right" with your health, and you deserve answers. If there is something wrong, then you need to know what it is in order to treat and manage it. Trust your instincts. As far as being "locked up", it's not going to happen here. And you do not have to have Lupus to post here and talk. This place is about living with Lupus, but it's also about determining what the problem is. Many of our members still do not have a definite diagnosis. You need to know that you can talk to people here and not worry about being told it's all in your head. We have some amazing people here with loads of info, and understanding. I'm glad you are here.

    Rob

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    That's made me feel surprisingly emotional Rob - thanks so much for that. I know you are right - I do need to sort this out. I already have hypothyroidism so I guess I know that there is a chance that I may have Lupus too but I really really don't want to have it. I want to wake up tomorrow and feel 'normal'. I have managed to be in work every day so far and I'm determined to keep things as normal as possible for the sake of my two daughters - I don't think I have symptoms any where near as horrid as lots of people on here thank goodness. You are all so brave I think it's incredible. If I am diagnosed with Lupus I am going to be very shocked but I'm going to try and make some lifestyle changes to enable me to live as full a life as I have always done. Let's wait and see - I just need to know what I'm up against. Thanks again Rob.

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    Hi Sara,
    Welcome to the forum. I am glad that you found this site. There are a lot of us with Lupus and like Rob said there are some still waiting on a definite diagnosis. Lupus is a really hard illness to get a diagnosis for, because like Rob said, it mimicks so many other things. I can not tell you how many times the doctors treated me like I was a Hypochondriack. Like you I knew there was something terribly wrong. I hope that you get some answers as to what is happening with you soon.

    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'm glad I found my way here too. Going to feel a complete fraud though if it turns out to be something else - I know you all won't mind though so thanks for being here. What a great job you are all doing - lots of people must be very scared when they first get sick and don't know where to turn. So well done to all of you.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    You are very welcome Sara. When I was trying to get a diagnosis, I had not a single person to talk to. I went through the whole diagnosis, and the fear that goes with it, all alone. I would have given anything to have an understanding person listen to me. I hope no-one else ever has to go through this alone like I did. Some of our other members should be along shortly to say hello. Make yourself at home, and let us know what you find out.

    Rob

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    Hi Sara,
    If you find out that it is not Lupus, please do not feel like you are a fraud. I am serious. I hope that you don't have this illness and even if it does turn out that you do not have it you are still welcome to post here at any time.

    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, in the meantime I think I'm going to start thinking about diet and exercise to get myself in as good a shape as possible to face what might be to come. Having repeat chest xray tomorrow (no lung pain until I was told about the collapse ) and MRI scan on my thigh muscles next Wednesday - the Rheumatologist sent me for blood work so when I go back to see him in 3 MONTHS (way tooooo long) I might have some answers. Then electric current through needles into thighs and then muscle biopsy on thigh yuk all sounds horrid - hope something comes up in the blood work then maybe he'll cancel the rest and save the NHS some money :lol: Well one has to stay optomisitic

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