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  • Suspicious I have may have lupus frustrated with lack of support from doctors

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    Old 07-18-2018, 09:52 AM   #1
    Sb245
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    Suspicious I have may have lupus frustrated with lack of support from doctors

    Hey guys!

    I'd like to pre-thank anyone who reads this post and can offer any advice, I like to think of myself as a positive thinker and make a conscience effort to not moan to those around me however I am starting to feel incredibly deflated and frustrated with my situation so I thought this would be the best place to connect to others who may understand.

    Back at the beginning of January I had a sudden onset of raynaurds - I woke up in agony, my foot was completely black on the top half and I couldn't put any pressure on my heal for 3 days, I felt sick with the pain and tried to sleep it off as much as I could, I eventually went to hospital where they told me I had the condition raynaurds which had caused frostbite on my toes. I was directed to contact my gp and seek a referral to a rheumatologist, which I did. I am still waiting for an initial consultation with the rheumatologist to come through 7 months later but since this day have suffered with raynaurds on a daily basis.

    Over the last 4 months I have also experienced numbness down my left side after/during exercise, this has got much worse as time has gone on and has completely scared me away from exercising until I am seen. I start to feel my left foot dragging as I'm walking throughout the day and have noticed my symptoms are always worse on the left side. I went back to my gp to explain this and was told that it was due to the raynaurds and to chase up my rhuemy, however I haven't seen any indication of this throughout the research I have done on raynaurds phenomenon?

    I am currently experiencing extreme fatigue to the point I'm having to take naps throughout the day to keep me going - this is very unlike me. I have constant aches and pains throughout my joints especially in my left hip. I have had problems previously with my left hip which I had physio treatment for and put it down to poor posture which is something I am now querying?

    I am also still under investigation with a neurologist as I had a seizure in march 2017, this was then followed by a 4-5 month period of intense anxiety. Again at the time I thought of these as solo incidents but since I have looked into lupus I am questioning whether this could be related?

    I have always had unexplained rash flare ups in the past but as I never had other symptoms I didn't think too much of it - I have since started taking photo diaries which seem to show a pattern with rashes appearing when my other symptoms are worse although sometimes I can experience a lot of pain with no visual symptoms.

    Could anybody shed some insight into whether I am right in suspecting lupus? And/or any advice as to what I can do?

    I have been chasing up the hospital but still seem to be getting no where and as I'm only 25 and have found myself scared to exercise and feeling like my body has suddenly aged 50 years I would really appreciate any guidance!

    Thankyou,
    Sarah

     
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    Old 07-18-2018, 12:39 PM   #2
    yayagirl
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    Re: Suspicious I have may have lupus frustrated with lack of support from doctors

    Dear Sb245,

    I don't know what country you live in, or what you mean by "chasing up the hospital", but here in the US you need to call a doctor and make an appt, or else ask your primary doctor to give you a referral to a specialist. There should not be a long waiting period.

    If you have insurance call them and ask what the procedure is to get an appointment with a specialist, and explain how long you have been waiting.

    It doesn't really help to self-diagnose or guess if you may have Lupus. You need seen by a doctor and to get referrals. If your doctor isn't helping, try going to Urgent Care and ask for a referral to a specialist. Tell them you are suffering and need help right away.

    Do you have insurance?
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    Old 01-17-2019, 09:03 AM   #3
    JohnR41
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    Re: Suspicious I have may have lupus frustrated with lack of support from doctors

    Sb245,

    Someone in my family has Lupus so I know how difficult it is to diagnose. Symptoms can vary from one person to another and you yourself may have different symptoms as time goes by. And who knows if there may be more than one health issue contributing to the confusion. Therefore, I agree that seeing a specialist is a good idea.

     
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    Old 01-17-2019, 12:24 PM   #4
    quincy
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    Re: Suspicious I have may have lupus frustrated with lack of support from doctors

    Hi...your symptoms are one sided, and Raynaud's seems to have a progressive noting of symptoms rather than an immediate initial presentation as you've had. As well, the numbness down one side might be neurological or even viral. Have you discussed this with your neurologist?

    Has your GP done a blood work-up?

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