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I saw the Rheumatologist the other day and he really listened to me. He agrees that something is definitely wrong with me and has ordered further, more comprehensive blood tests. He said that I have some features of several Connective Tissue Diseases but not enough of each of them (or indeed all) to give a specific diagnosis, so he's treating it as Undifferentiated Connective Tissue Disease pending results from the latest tests. I'm due to see the specialist nurse in a month with a view to tailoring therapies/medications. He suggested Hydroxychloroquine.

Needless to say I am relieved that it is not all in my mind! And that I've been busy researching UCTD. Whilst I wait for these results does anyone have any advice or information that may be useful?

Much appreciated.

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6 Replies

  • Posted

    Hi Susan

    I'm in a similar position,  I have been told there's a chance I could have lupus . I have had JCA/S/S kidney problems on account of only been born with 1 so I'mnow been ttested due to a new blood been done before I started a new biological drug. I have been on H/cq before a good drug to start . And even if you're doctor can't tell you exactly what it is won't matter because a lot of the Autoimmune system diseases are usually all connective anyway. So bide your time until such time as you get the answer's you need . Good luck x

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    • Posted

      hello Susan I just wiped off my original response! I was diagnosed with mixed connective tissue disease with lupus features, sjorgrens, reynauds, 6 years ago having visited GP saying I thought I was cracking up with a multitude of horrible symptoms and said "you must think I.m a hyperchondriac"..thank goodness i was listened to and sentfor exhaustive blood tests, specklegrams showing RNA and ANA positives..indicating my problems were and are very real - there is no cure as yet...and was referredto rheumatology consultant who happened tobe a lupus specialist andwho made a full diagnosis, I was put onto hydroxychloroquin to dampen my immune system which attacks its good cells as well as the bad....with occasional use of prednisolone short term for extrems ofpain and stiffness etc, occasional topical jabs into painful areas of muscle, paracetamol - i cannot take anti inflammatories ashave oesophagus problems I attend 6 monthly for multi blood tests for the mctd//lupus before seeing consultant ....REMEMBER they cannot SEE our symptoms so always DESCRIBE yours to the medics and they will do what they can for us...GOOD LUCK Susan and all sufferers.....
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    • Posted

      Thank you, Valerie,

      I think there must be very few GPs out there who actually listen to their patients. We certainly seem to be in the minority. I just received a copy of the letter the specialist has sent to my GP which details yearly follow-ups to check whether anything has progressed to a full-blown Autoimmune/Connective Tissue Disorder, so I certainly don't feel like a hypochondriac anymore!!

      It is reassuring to know there are others who are in the same boat. Jean suggested a daily diary of symptoms, which I must admit I had not considered but it is something that I will do from now on. As you say, a full and detailed description is the only way the docs will know how we feel. (If only my fingers and thumb can withstand the writing!!)

      Best of luck to you too.

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  • Posted

    Hi Susan

    It is really good to know that somebody believes you are feeling unwell. It is so hard when you have no exterior symptoms for them to diagnose. I have been diagnosed with Mixed Connective Tissue Disease and it has taken me seven years to get a diagnosis. It is very difficult for them to determine which is which as they both present at different times and levels. I take Hydroxychloroquine and after about 12 weeks it does help a little with the tiredness. It also helps with the numbers of mouth and nasal ulcers I was experiencing. I have pernicious anaemia and underactive thyroid plus my rheumatologist thinks I may have Sjögrens as well. Keep a diary of how you feel on a daily basis, so that you know what affects your health and you can keep your rheumatologist/nurse advised. We are all different, which is why it is difficult for them to diagnose. I manage my condition by listening to how I feel and resting accordingly. I don't have a quiet life, I work full time, have a family and an elderly mum, so keep your chin up. Once you start on your medication you will hopefully see a improvement in how you feel. Take good care of yourself!!!!

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    • Posted

      Thank you, Jean,

      I had begun to think that I was the World's most accomplished hypochondriac! Thanks for the advice re: daily diary, it is actually something I hadn't thought of.

      I'm only part-time but find that after a particularly busy shift on my feet the whole time my toes are especially painful. I'm hoping that the proposed medication will alleviate some if not most of my daily complaints!

      Thanks again, and good luck to you too.

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