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Thread: Doctors confuse me

  1. #1
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    Default Doctors confuse me

    Hi everyone, I'm new and in the process of trying to work out what's going on with me. I'll try keep this as brief as possible.

    I'm 21 years old. My main symptoms are joint pain, a bit of swelling, stiffness. Nose ulcers. Vascular rash (petechiae). Fatigue. Dry eyes and mouth. Raynaud's. I also have asthma, hypermobile joint syndrome and Celiac Disease.

    These symptoms started about 11 months ago, but before than I had episodes of fatigue and joint and muscle pain.

    I was seeing my GP who was a little confused by my symptoms but just gave me Naproxen and ordered blood tests. ANA- 1:80. ESR- slightly elevated. CRP, anti-CCP, rheumatoid factor, ferretin, CBC- normal. Repeated a few months later. ANA- 1:160. ESR, CRP, CBC- normal.

    Then my joints flared up big time and I was really sick. I went back to my GP who freaked out. Gave me Prednisone (20mg a week, dropping by 5mg a week) and sent me to a rheumatologist (1). I eventually got to see the rheumy and I was on 5mg of Pred. at the time. She dismissed my symptoms and said it was 'emotional' and 'twisted ankles'. She ordered lots of blood tests, but nothing showed, ANA was negative, ESR 18 (0-18) anti-dsDNA and all those were negative. I got sent to a physio. Physio sent me back because I have fluid under my knee caps. I got to see a new rheumatologist (2) (but had to pay to go privately). She dismissed me as Fibromyalgia, but wanted to order a bone scan but said it'd probably show nothing. I saw an ophthalmologist who confirmed dry eyes and said I definitely have 'some degree of Sjogren's and maybe RA'. I had the bone scan and found out this week that it showed uptake in my shoulders, wrists, fingers (DIP and MCP joints), hips and knees. The rheumatologist (2) rung me and said that it definitely shows arthritis and that she wants to start me on Plaquenil. I asked her if she could make a diagnosis and she said "not at this stage, but it's definitely a connective tissue disease, either Lupus or Sjogren's".

    Today I saw a new rheumatologist (3) (complicated story). He said no it's not Lupus or Sjogren's because my ANA was negative (although I've read otherwise). He said he thought it was Psoriatic Arthritis because I have nail pitting, hip arthritis and the involvement of the DIP joints... But NO PSORIASIS... But then he said "well you're quite Fibromyalgia-ish" (I have no muscle pain, joint swelling, 8 tender points in my sore joints)! The rheumy (3) asked me if I'd like to continue seeing him or see rheumy 2. I said rheumy 2!


    He gave me a script for Plaquenil. I'm taking two pills one day, one the next (I'm not sure what the dose it, I'm too lazy to get up and check haha). I've been really dizzy tonight (I took it with tea). Is that normal? I have low blood pressure too (rheumy 3 said "I wish my blood pressure was that low"). Also a bit of indigestion..

    Also, my liver function test was 'high' last time. He didn't say what that meant but that I have to have it tested every 6 weeks. I don't drink alcohol. Any idea what this could mean?


    I'm sorry this is so long, I tried to keep it as short as possible! I'm wondering if anyone's got any advice or can help me with my questions, especially the liver function one!!

    Thank you!

  2. #2
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    Welcome to WHL =) It sounds like you've been through quite alot in the past year. I have many of the same problems as you. I think you and the second rheumy you saw are on the right track and hopefully within the next few months you will be feeling better on the plaquenil. I myself have never had high liver tests but I know there are other on here who were talking about it recently. Some of the stuff in this thread is related to a medication you aren't on but maybe it still pertains to you also http://forum.wehavelupus.com/showthr...-serious-quot-. I hope some others come along who are more helpful =)
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    I am not much help but I do know you may need something more than tea with your Plaquinil. My pharmacist recommends taking it with food or milk. That might help your dizziness. I also remember more side efffects in the first weeks of taking the meds and feel better as my body became accustome to it.

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    I too agree that doctors can be confusing. My first trip to the rheumatologist confirmed Lupus and the next trip she completely changed her mind and diagnosed me with some long named joint disease. The last time I went with a rash and she said it was nothing and even made the statement the less symptoms you have the chances are you aren't sick. What is that supposed to mean. However, she has left me on the Plaquenil and that is helping. I do recommend food with the Plaquenil though.

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    I take plaquenil just before bed : ) then you dont have to suffer the dizziness/nausea etc.

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    Hey Nuggets,

    I've been on Plaquenil for about 3 years now ~ I take it morning and night with a Boost nutritional drink. I don't have problems now but I sure did when I first started: oh my gosh, my poor little stomach, it was so upset. And you can interpret "upset" to mean "gassy", lol. I was embarrased to go anywhere or be around anyone. My rheumy promised it would pass (no pun intended) and it did: it took about 3 weeks for my body to adjust. Try a little food or milk and see if that helps, and just hang in there ~ it'll get better!

    Robin

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    giggle (09-27-2011)

  8. #7
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    Quote Originally Posted by prothumos View Post
    y rheumy promised it would pass (no pun intended) and it did:
    LOL! This gave me a giggle

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    Thanks so much everyone. I'm going to see my GP today to see if she can offer anything to make me feel less terrible. Today is the day I take 2 pills, I took one this morning and I'll take one tonight. My stomach feels ok, but I'm just tired and have no appetite. I'll try take them at night if I can, but it seems that not taking 2 together helps! I hope that it doesn't last too long. I was doing better without it than I am now!

    Giggles, I went to kindy in Mackay and my brother was born in Mt Isa.

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    hi chicken nuggets.
    welcome to our cyber family.

    the doctors do not always understand. so it is hard for us to completely understand also.

    basically, having a negative test does not rule out any auto immune disorder.


    a diagnosis is based on what is happenning, not what is not happenning.
    it is also based on what other disorders are not present.
    that means doctors rule out other medical problems first.

    once again welcome

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