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Thread: Finally saw Rheumatologist today and about time

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    Unhappy Finally saw Rheumatologist today and about time

    Well as most of you know this was my day to see the Rheumo specialist the main man and i've never felt so diappointmented, instead i end up seeing the Doctor who saw me in the day unit, it's a good job my hubby was with me as he only speaks broken english.

    We went in and he said i only saw you last week [i thought here we go] well he asked me about my Raynauds and how water affected me i told him and i said as for my middle finger on my right hand if you chopped it off today i would'nt miss it, it hurts that much and by the way i do have Lupus because you would'nt commit yourself to telling me, my skin specialist came forward and told me as he can view my results.

    He told me the blood results for clotting in the body as come back negative, so at the moment your at not at risk of clotting and also being put on wulfrin but keep taking the asprin and why are you only taking Folic acid tablets for the anaemia, i said that's what the hospital described and he said it's not enough for me, so from now on B12 injections every 3mths also.
    He told me the x-ray for the bottom of my spine shows it's not to bad at the moment but he had'nt got the lung x-ray but did mention that all my symtoms i'm suffering are off the Sjogrens disease besides the lupus in my system they are playing against one another at the moment, so my system will be anyhow [well that's past a joke in itself].
    He's sending a letter to my doctor for me to start plaquenil sometime next week or the week after and my dosage is to be 200mg one day and 400mg the next day and i've got to work them like that plus for me to have a B12 jab.
    My husband then stepped forward and asked for a print off for my results off my blood tests and he said that's not for me to give i'd after to talk to the main specialist but come next week i'm going to see my doctor and see if he will get hold of them, if not avril for my epilepsey.

    Like other member's on here have stated they just won't commit themselves so why are they in the job, it gets me so angry when we're suffering.
    Last edited by Peridot_Gem; 01-25-2011 at 12:05 PM.

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    I am so sorry things did not go as you wished! I hate that I have to say that so often but sadly it is how too many of the doctors are. I am glad about the plaquinil although I wonder if you told him what your neuro said? It is helpful but you don't want your seizures getting worse.

    You know we are here for you. Sending hugs your way
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by tgal View Post
    I am so sorry things did not go as you wished! I hate that I have to say that so often but sadly it is how too many of the doctors are. I am glad about the plaquinil although I wonder if you told him what your neuro said? It is helpful but you don't want your seizures getting worse.

    You know we are here for you. Sending hugs your way
    Hello Mari,
    I was hoping to see the main man himself because that doctor told me he did'nt specialize in lupus just blood clotting and i was hoping to get my results copied but like you say at least they're letting me have the plaquenil but i must have my eyes tested this week before i see my GP and i did tell him what avril told me about the epilepsey and if the plaquenil makes them worse to pull off it and he was ok with it but mari it may be how your body is with your fits plus the electricity, i hope it does'nt go that way because for years i have fitted bad and i do need something to help me with this pain, it ain't half a nightmare at times.

    Thanks alot mari, it's dearly appreciated mate. xxx

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    It makes me sick to read post after post where doctors cause more harm to people that are already suffering! Did they forget that their Hippocratic Oath states, "they shall do no harm"? I fear seeing new doctors because of the horror stories and the years I suffered at the hands of uncaring doctors. I'm glad you're getting some treatment but I'm also sorry you have had to endure such unconscionable experiences with professionals that are suppose to help people. I wish you well!

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    Hello Allie,
    Thanks for the wishes mate. I've been all through this lark for 25yrs and am used to it, i've rarely come across a genuine doctor who will step forward for a patient but it does get abit annoying when they won't give you what your actually wanting plus there's so many of us with unspoken answers and it's not right.

    Hugs to Allie xxx

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    I honestly don't think doctors understand Lupus at all. And I mean ALL doctors. I have a wonderful primary physician and he doesn't pretend to be a know it all but throw in the rheum, neurologists, puluminary, etc, and they'll bluster all day and not say one thing of value! My primary has literally sat me down and we've gone over what we've done and what's still available and tried to come up with a new plan. Sometimes the plan helps, sometimes not but at least I feel like he's aware of my case and wants me to be involved. I think he also can see that there are times I'd really, really like to give up and frankly, I don't think most of the doctors care if I do or not.

    My lungs are screwed up again and my mom is freaking out because I'm not freaking out (racing to the doctor's or ER). I see my doctor tomorrow and I'll still be sick and honestly, I'll probably still be sick next week. I've had two good lung weeks in five months. We've figured out that for some reason Valium helps and so do breathing treatments (hate them!) so we're making progress. Chances are, it really is shrinking lung disease but since my ANA score isn't high, my rheum discounts Lupus. My pulumanologist literally dropped the ball the instant he heard that Lupus was in question though my lungs are still severly compromised.

    Like I said, I don't think they have a clue when it comes to this disease. All of us have something different but so much in common. I just say, thank God we have each other!

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    Yeah, I have a wonderful allergist and primary care physician (both women) and neither ever question anything I tell them. They are concerned that they may not be doing what's best for me since they don't know about Lupus either, but I feel safer with them than some doctor that discounts my complaints. They both want me to see a Rheumatologist and I really don't want to. My fear is that he will say I don't have Lupus (even though another Rheumy said I did years ago) and they will not be as supportive any more. I've had it happen before with specialists and it scares me.

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    Hi Serand4,
    From what i heard today that doctor was all over the show and he asked me if i was having pain around my heart i told him i get severe pain and my husband agreed with me and i told him i saw my GP as i've got a swelling to the right lung and apparentley the lupus is causing that.
    I'm on valium but mainly take them to carm my brain down when in bad pain but because i get tied easily now i hate taking them because i'm out for the count.
    I really hope it goes ok at the doctor's when you see them and i really wish you all the best.

    I seem to get more understanding from my GP then other's and my ANA & ENA are high like yourself, that's all down to the autoimmune diseases we have and today he asked if i smoked i said yes and i ah packing it in because anti-depressants dow work anymore and to have a fag goes a long way with me and coping.

    Well i agree with your last comment, it's a good job we all have one another for such good help and support.

    A large hug mate for tomorrow. love Terri xxx

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    Quote Originally Posted by GoodDog View Post
    Yeah, I have a wonderful allergist and primary care physician (both women) and neither ever question anything I tell them. They are concerned that they may not be doing what's best for me since they don't know about Lupus either, but I feel safer with them than some doctor that discounts my complaints. They both want me to see a Rheumatologist and I really don't want to. My fear is that he will say I don't have Lupus (even though another Rheumy said I did years ago) and they will not be as supportive any more. I've had it happen before with specialists and it scares me.
    Hello Allie,
    I am sorry mate you've been messed about alot but you could drop on a Rheumo specialist that is genuine it's just finding one who actually cares about his or her patients but it's nice how you have 2 care physicians you can trust and talk to.
    At the moment for me besides seeing specialist's, i just have my hubby and my dear close friends on here who understnad when i express myself and it's surprising how much that means in life, when your down and feel you can't turn to anyone.

    Takecare mate xxx

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    Hi Terri,
    So sorry to hear about your Dr. visit! It is so sad,And ive had so many of those same dr. visit's
    myself, till ive lost count!! Im wishing you the best of luck with the plaquenil that it dose you good!! And helps ease some of your pain & symptoms! And not cause you any problems
    with your seizures. I have taken the plaquenil before and it did take away a lot of my
    joint & back pain and eased my simptoms a bit.

    Lot's of love to you!!!! And Gentle Hug's too!!!!!!!!!!!!!!!!! Diane,,
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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