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Thread: Which specialist?

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    Default Which specialist?

    I have been having lots of health problem over the last 10 years which have just got a lot worse this year. It started with rashes either all over my body or just over my face, seizures, joint pains, fatigue, chest pains and terrible headaches. I had blood tests that came back with ANA positive but I didn't know that this meant anything. I never considered that I had any type of illness and I thought I was pretty healthy and fit.

    But then earlier this year I had a stroke. My neurologist was really shocked even though I have been suffering seizures of increasing severity for the last 10 years. Since the stoke I have started having hallucinations and suffering from temporary amnesia as well as more and more seizures, plus it turns out I have problems with my heart valves and also irregular heart rate (waiting for appointment with cardiologist - I always seem to be waiting!). I started having more and more chest pains so I ended up in hospital where the ER doctor started asking me about the rashes and joint problems and suspected I might have Lupus or some other auto immune disease. He then made a referral to a Rheumatologist at the same hospital and sent a letter to my neurologist. He said it would be a good idea to make a list of all the problems I have been having even if I think it is irrelavant. I saw my neurologist and he also thinks it would explain a lot if I had Lupus. But he mentioned maybe I should be seeing an Immunologist instead. Anyway, he said to see the Rheumatologist anyway - after all I had waited 10 weeks already for the appointment. So I had kind of pinned all my hopes on seeing this doctor. Not that I want Lupus but I just want to feel better. I just need some glimmer of hope to hold onto. So after I wait for 3 hours in the waiting room this morning I get to see the doctor and he asks me about the joint pain which I explain comes and goes. At the moment the biggest problem is my hip - its so painful I have use a walking stick and it wakes my up every couple of hours at night and I can't sit down for very long. He gets me to stand up and touch my toes. Then he pronounces that I have hypermobile joints and I need to just do more exercise and get some orthotics for my shoes and that will solve all my problems. When I showed him the list of all the neurological, heart, mysterious rashes, he said they could be caused by anything and I would have to see other doctors about this. So I just burst into tears. I guess I had thought he would be able to wave a magic wand and make it all disappear. When I said that the 2 other specialists suspected I might have Lupus or something similiar he said he didn't see anything that suggested Lupus. Am I going crazy? Shouldn't he have done some blood tests or something? I am feeling so lost. Maybe I am just worrying too much but I am really worried about having another stroke. Last time I recovered in a few days and I only have a problem with speach when I'm really tired.

    Has anyone else had this kind of experience? Should I just accept this doctors advice or get a second opinion. What's the difference between a Rheumatologist and an Immunologist anyway?

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Oh My GOD!! Yes, unfortunately, too many of us have had these experiences with doctor's who treat us as if we are idiots and rush us out of their offices without taking any tests.
    Yes, he should have done blood tests before dismissing a possible diagnosis. Since Lupus can sometimes take years to accurately diagnose, it stands to reason that it cannot be dismissed without some type of tests. Especially in light of the fact that he was SO QUICK to throw out a diagnosis of hypermobile joints (whatever that means). And you said this was a rheumatologist??? He, apparently, was someone who just did not want to be bothered!
    You have a right to call back and ask for another opinion from another rheumatologist - that is an inalienable right!!. You have a right to demand that the next rheumatologist run tests to determine exactly what is causing your symptoms. If you do not receive a satisfactory response to your requests, demand a copy of your "Patient's Bill Of Rights" - every HMO, hospital and doctor's office must have them (or something like them) and contact their member's services/patient services department
    to demand that you be given treatment, tests and services - as is your right!
    You must take charge of your treatment. Do not allow yourself to be at their mercy because they will (as you have seen) simply dismiss you. You have to demand that you be taken seriously and that you be treated. If you have to go through 10 doctors to find one who listens to you and cares about you, you do that!!
    We are here to help you in any way that we can. Educate yourself and take control of your health care. I wish you the very best..keep us informed of how things are going!
    Peace and Blessings
    Saysusie

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    I agree with Saysusie. Get another opinion and keep getting them until someone listens to you and your body. I had this one rheumy at a teaching hospital, after poking, prodding and twisting my already very painful body, tell me that he didn't know what i had but it certainly wasn't lupus. Then showed us the door. It was a 2 hour drive there and I cried all the way home. I have since found a great primary dr, who sent me to both another rheumy and a dermatologist. The new rheumy said he really wasn't sure and wanted to wait for my appt with the derm. The derm did a biopsy of the rash on my back and turns out that not only do I have FMS, ANd lupus but I also have another MCTD but they don't know which one yet (waiting on more tests to come back). It took me seven years to get a diagnosis and some help. I've fired drs and been fired BY them. But in the end I found one to listen and take me seriously and that is all I needed. Just one good one can make the difference.
    I am sorry you are going through so much and hope you can find a great dr soon. {{{HUG}}} BTW I've never heard of that diagnosis he gave you either and I thought I'd heard just about all of them.

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    Thanks for the support. I talked to my brother about it last night and he was furious. Anyway he is going to come with me to all future doctors appointments to make sure I get proper treatment and all the right questions asked and answered. I'm just not very good with the whole doctor thing. One part of me just wants to give up and accept that the doctor must know what he's talking about and the other part says no it can't be right. But luckily I have a very supportive family and they've seen how much I have deteriorated and they are not very happy about it. Then this morning on the way to work the whole world just went black and then I when I came out of it I was driving along and had absolutely now idea where I was! So now driving is out of the question I guess. So I guess I will just have to do something.

    Thanks again

    Be glad to hear from anyone with these kinds of CNS symptoms. How do you cope?

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