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Thread: First rheum apt Friday, need to prepare! Desp for treatment, so I'll!

  1. #1
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    Smile First rheum apt Friday, need to prepare! Desp for treatment, so I'll!

    Hi everyone!
    I'm new to this site, big hello! Iv learned lots reading thru all the posts and it's heartwarming to see how supportive you all are to each other, and how open many of you are about how you are feeling. Iv been on a roller coaster ride of awful symptoms and now emotions as the symptoms worsen and have affected every sphere of my life. It began in September mildly but has been declining rapidly since march and iv changed GP as my dr who knew me since birth said it was in my head. This was so hurtful, and I spent a couple of weeks believing him, but the swollen painful hands affect my work so bad ( midwife) I couldn't ignore it, so changed GP. The knees, ankles, hips, elbows, toes, shoulders are all affected. Had shingles, another two infections, fingernail fell off. My ribcage hurts terrible, my upper abdomen feels very swollen and tender,( but not agony) as if something is stuck under the right breast, like a tennis ball. My liver bloods have been abnormal occasionally with no explanation. my feet and hands have reduced sensation, always cold, painfull and purple, migraine, night shaking, enlarged
    heart, palpitations and raised bp. Breathlessness, loss of appetite and weight loss, nose sore, hair loss. Iv very bad cognitive issues and can't remember things. Things are becoming acutely bad at work, there are many things I'm struggling to do, so I saw a private rheum as my nhs apt was taking while ( it took 13 weeks) he reckoned possible raynaulds/sle. I had bloods which showed raised ESR normal CRP, mildly anaemic ( but I had bilirubin in urine at this point, ? Haemolysis)
    Anyway I'm going on too long, I phoned for the important ones, the ana, and the receptionist told me the rheumatoid was neg but didn't clarify on the ana, even though I asked three times so I gave up. She kept saying, it's fine, it's normal. Unless it reallis negative, in which case I'm really worried, because everything I read says the ana
    doesn't matter for diagnosis, but when I read posts, I see folks who are really sick
    getting short shrift from rheumys, even with a positive ana, and I'm worried I'm going
    to be shown the door, with no help at all.
    My job and life are going down the toilet, unless I start getting some ability back. I'm so counting on a good appointment. Please give me your thoughts folks, on my symptoms and how I can best prepare for my apt. I really want to leave with medication to help me. I know I'm not going to leave with a diagnosis, but medication
    would be a great start, and would show my boss I'm on the uphill road!

    Thanks in advance for all advce

    Lindylou xxxx
    Last edited by Lindylou; 06-20-2011 at 03:49 PM.

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    Hi Lindylou,

    A nice warm welcome to our family of WHL and nice to have you with us, yes we're all open to one another and full support is given in which way possible...as we're the suffers not the doctor's.

    Take no notice of that comment it's all in your head so many have had that throwed at them besides myself, it's the Doctor's way of fobbing you off so they don't have to deal with the issue it really annoys me.

    Well i can't say you have raynauds until you see the rheumo but i'd say 80% with the cold hands and those feelings plus you get pain with it, i'd say you have Raynauds but we're not doctor's on here to say so positively and for a start off your anemia wants sorting out incase that drops to low and there is a strong possibility of SLE which i have and a good many member's it affects your joints organs and can give off some severe pain.

    They may be saying your ANA is negative but so many of us have stated this before if you do have Lupus it loves stress and depression it kicks your symptoms into hurting you more and it is terrible for fluctuating your bloods in other words you may have something but it can make the readings say negative, it took 6mths for my anaemia to show it's true colours.

    Just don't let them mess you about in this state and pain your in...write down your symptoms your having and also your main points you need to put across and also about your ANA test, as alot of us when we get to see them your mind can fire blanks off, so i do suggest this strongly and other's member's will besides.

    I'm adding to links below for Raynauds and SLE for you to read incase it helps with what your suffering.


    www.raynauds.org.uk/raynauds/raynauds

    www.medicinenet.com › ... › arthritis az list › systemic lupus index

    Hugs Terry xxx
    Last edited by Peridot20_Gem; 06-21-2011 at 01:18 AM.

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    Dance in the Rain (06-20-2011), Lindylou (06-20-2011)

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    LindyLou,
    I don't have much to add since i am new, and undiagnosed and waiting for my dr appt as well. I am trying to prepare and determined to get help. These boards are an awesome place to start, welcome and good luck,
    Cheers,
    D
    Anyone who says sunshine brings happiness has never danced in the rain. ~ anon

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    welcome linylou,
    may i suggest you aproach the private rhuemy, and ask for a printout of your blood test.
    take these to your new appointment.

    also take the time to write down, in point form what your symptoms are.
    when the rhuemy starts asking questions, it gets hard to remember everything.

  6. The Following 3 Users Say Thank You to steve.b For This Useful Post:

    Gizmo (06-20-2011), Lindylou (06-20-2011), lovedbyHim (06-20-2011)

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    Hi lindylou, welcome to a great family who with bless your socks off! I have raynauds, bilirubin in urine, pain in chest often, cognitive issues that made me believe I would lose my job, joint pain, and negative ANA at times. U have SLE, Hoshimotos, fibromyalgia, etc.

    I always get my bloodwork results as they are apt to overlook things and I call them on it. I also can see when my kidneys are losing protein. I have taken charge of my disease and treatment now, because so many docs have blamed my symptoms on menopause and depression.

    Keep strong and don't let the docs discourage you from having a proper diagnosis. It's takes a strong woman to be a midwife! If you can do that you can get to the bottom of these symptoms. Bless you in your search for the truth.

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    Hi Lindylou,
    You have obviously been doing some reading on this site, so you already know what a wonderful group of people this is. I hope you will stay around, whether you get your diagnosis or not. Terry and Steve have already given you great pointers. After reading all the posts about encounters (good and bad) with doctors, I think there is only so much you can do if the doctor is a jerk. I have my degree in nursing, and when I go to the doctor, I do my best to talk with the doc on a professional level. You might want to appeal to him as a fellow medical professional and emphasize how your symptoms have affected your work. Be specific and compare what you were like a year ago to what you are like now. It seems like sometimes doctors react badly when people go in and say that they think they have lupus. I wonder if it is more effective to say that you are looking for help to feel better and so you can continue to work at your career. You can tell him what the other rheumy said (or better yet bring him the records), but I have found that going in with an open mind is sometimes the best course. Of course you can steer things in the right direction with your list of symptoms and questions, but keep in mind that there are LOTS of autoimmune diseases.

    Have you actually been worked up for the enlarged heart and other cardiac symptoms? If not, maybe that would be helpful to do.

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    Lindylou (06-20-2011), steve.b (06-21-2011)

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    Hi all,
    Thanks so much for the very warm welcome! It's so good to know there is somewhere I can come for help, without being seen as a moany!
    Terry, thanks for the links, iv had a look and the pics of raynaulds look like my hands, though mine are much less severe, and I have a good pic of mine like this which I caught which I hope may help. I've been keeping the diary you suggested for a month or so too, I hope it helps, have so much pinned on this apt, I will stress my pain levels too.
    Hi Steve,
    There's a letter from the private rheumy in my GP notes, and he suggested all the antibody bloods be done via GP to save me, so the results will all be in my notes, along
    with his opinion for my nhs appointment. I met with my GP after he had received the letter and he told me everything pointed to lupus and to prepare myself for this diagnosis, but I am expecting to be huckeled out with nothing iv heard so many sick folk being turned away with no help! I'm hoping for an experienced rheum for whom the ana is not everything. I have six or seven of the other criteria. Thanx for your
    advice and the welcome!
    Hi lovedbyhim, (I love your name!), I was strong and determined but it's wearing so thing and I almost left my job today, feeling so incompetent and inadequate. The cognitive problems are quite acute, and my colleagues thought I was behaving quite out of character they said. I don't feel like myself. Im sure everyones talking about me and something awfuls going to happen. It's a bizarre feeling, and I cried in corners in
    work all day. Thank you for your prayers, I will be counting on them for help on Friday.x
    Hi gizmo, it is a wonderful group and I am fortunate to have found this site. I think your perspective is great, I will talk to the doctor from the point of view of needing to get to the bottom of this to continue with my job. My difficulties in that area are immense and are causing me great stress, I will try and get the doc to empathise, it's a lady, how would she like to be in my state, unable to practise after all that training and hard work. I won't put it like that but I'll try and get her to see my desperation. I plan to go in with a brief list, give my history of symptoms and wait and see what she says, I'll say nothing. I'll only question if I get fobbed off.
    I have been worked up for the enlarged heart, not had results yet, my bp keeps getting higher! So don't know about that.
    Gizmo, have you managed to continue practicing nursing? does the confusion and swelling go down with medicine? I worry about my work future if this is my illness.

    Thanks again everyone!

    Lindylouxxxxx

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    Hi Lindylou,

    It's lovely to have you with us and deeply showing your concerns of illness and we're try and help as much as we can and any imput you can give goes such a long way also.

    It sounds like you've got everything covered for you visit but if any bloods do come back negative it is most likely what i mentioned the Lupus playing with your blood if your symptoms are connceted to it, there's so many member's had negatives and had to go on with bloods being took till somethings showed...Lupus is a very testing Disease but i wish you all the very best and please keep we updated.

    Hugzzzzzzz to you Terry xxxx

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    Quote Originally Posted by Lindylou View Post
    I was strong and determined but it's wearing so thing and I almost left my job today, feeling so incompetent and inadequate. The cognitive problems are quite acute, and my colleagues thought I was behaving quite out of character they said. I don't feel like myself. Im sure everyones talking about me and something awfuls going to happen. It's a bizarre feeling, and I cried in corners in work all day.

    Gizmo, have you managed to continue practicing nursing? does the confusion and swelling go down with medicine? I worry about my work future if this is my illness
    Are you feeling paranoid today about your coworkers or were they really talking about you? Paranoia can be a CNS symptom, so be aware that your perceptions may be altered. If they are actually telling you that your behavior is different, maybe you can talk privately with one or two (whom you trust) and ask them about specific changes they have seen. I would be a good listener, but resist the urge to confide in them - your words might be used against you later on.

    Being in healthcare, you are treading on much thinner ice when it comes to needing to work vs protecting your patients from possible error from brain fog or other CNS symptoms. That pressure has to be incredible and my heart goes out to you. I don't know what country you are in, but you should probably look at your company's policy manual to see what your rights are, before something happens. That would be good info to have when you see the rheumy, too. If she agrees that your work situation needs to be addressed, knowing what documentation you need will be really important.

    I've spent about 10 minutes trying to figure out how to say this and just can't get it right, so I'm just spitting it out: in the U.S. a licensed healthcare provider could be in legal trouble if they realized that they were putting patients at risk, but continued to practice, and a patient got injured as a result. I don't know what your laws are, or how affected your cognitive abilities are - but it's something I'm sure you have thought about. In the U.S., if you doctor says you shouldn't be delivering babies (for example) your employer would have to find you a position which uses your abilities, but doesn't require you to do things that puts your health or your patient's health at risk. Maybe you could be a trainer for other midwives, just do routine prenatal care, etc...

    I haven't worked as a nurse in over 20 years, but I have been looking for work in the medical field since January. I have thought about taking a "refresher course" so I can return to work as an RN, but I am afraid that my mental fuzziness and tremor will put my patients at risk. I am VERY concerned that I don't have the physical ability to work a full day, or perform the physical work of nursing. My meds do help with some symptoms ( for lupus I am on an immunosuppressant, plaquinil, quinacrine and an experimental drug). My stomach won't tolerate anti-inflammatories, but those usually give people some relief from the swelling and joint pain. As for the mental fog: prednisone works best for me in low doses. In higher doses I just get too anxious. Please let us know how things go on Friday. It sounds like you have a good plan, and will have your records and notes to yourself so you don't forget anything.

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    Hi Lindylou,
    Welcome to WHL. I was a midwife's assistant when we lived in Oklahoma 25 years ago, so I know how tough your job can be. Luckily for me, I did the job long before I started having any AI symptoms. I was teaching high school Latin when I was dx'd and had to give it up in 2009 when the stresses of teaching got to be too much for me.
    You have a good handle on how to work with your docs. Keep researching, and keep pushing for answers to your questions.
    Be aware that autoimmune issues can come in pairs or even groups. I have Mixed Connective Tissue Disease, which means that I have a mixture of several AI diseases.
    Many of us here at WHL have two or more AI diseases.
    Good luck, and keep us informed.
    Hugs,
    Marla

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