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  • New here. 1st appt looming! Could do with some advice please

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    Old 06-21-2008, 11:07 AM   #1
    jo237
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    New here. 1st appt looming! Could do with some advice please

    Hi, this is my first post here and would really appreciate your thoughts and advice. Sorry in advance if this is a bit long. I have been tested in depth for MS for the last five years but no dx. However, if I give you a run down of problems perhaps you may help.
    Persistant and often UTI's since early teens. Hysterectomy at 26 following 2 miscarriages, heavy periods and 4 abnormal smears. I have huge joint pain and can bearly stand when I get up in mornings. My hands and arms and stiff and painful and quite bizarly (sp) the ends of my fingers. My lumbar puncture showed Oligoclonal bands in the blood and Fluid suggesting lupus not MS. My last four urine tests have shown blood in the urine. Massive!!! photosensitivity ie no more than 10 minutes in the sun without braking out with itchy blisters. I also have a huge reaction to insect bites and have to carry round prescribed tablets. A fatigue that is like someone suddenly turning out the light. There are loads of other silly symptoms but I wont bore you further.
    My first ruemy appointment is in 2 weeks time and although I am going there because the GP thinks I have CFS?? do you think I could ask if he thinks I may have Lupus.
    Many thanks for your replies in advance and your help.
    xxx
    Sorry, what I should have added above is, I have been hospitalised three times in last few months for a fecal impaction which they say is due to thickening of the colon wall. I have also had optic neurtis twice and recently had "episeritis" in my left eye and hospital said is was very possibly due to RA or auto-immune disease.
    Thanks

    Last edited by jo237; 06-21-2008 at 11:33 PM.

     
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    Old 06-21-2008, 11:35 PM   #2
    jo237
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    Re: New here. 1st appt looming! Could do with some advice please

    Please.... is there no one that can offer any advice..... please

     
    Old 06-22-2008, 01:49 AM   #3
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    Re: New here. 1st appt looming! Could do with some advice please

    Jo, Hello & welcome! I'm so sorry to read about the very tough problems you've been having. I'm merely a patient, but it makes sense to me that you see a rheumatologist. If you don't want to say you've been reading online, you could say that a friend (or co-worker, etc.) zoned in on something you cited (rash, joint pain, miscarriages, etc.) and reeled off some autoimmunes like lupus, RA, antiphosphospholipid syndrome, etc. (Some doctors react very negatively if they think a patient is self-diagnosing.)

    Here are things you could do in advance:

    1. Read the "sticky posts" (permanent info posts) at the top of the thread list. (a) One lists the criteria used pretty much worldwide (I think!) to Dx systemic lupus (SLE). To support a Dx, you must typically meet at least 4 at some time in your life, not necessarily all at once. (b) Another lists "alternative criteria", things seen early on in people who later go onto to develop SLE. (c) A third describes antiphospholipid syndrome (APS), a clotting disorder in which blood clots, headaches, miscarriages, etc. may be seen. APS can occur in conjuction with lupus, or "standalone". (d) The last has a resource where you may find more info on tests. Warning: lupus is tricky in that there's no single test that proves/disproves it, while APS seems a bit more straightforward.

    2. Look in your local library or bookstore for books by Dr. Graham Hughes of the Rayne Institute, London. He's famous worldwide: he's credited with the breakthru work on APS, and he authored the "alternative criteria".

    3. Write a brief outline of your LIFETIME medical history, with dates, symptoms, durations, etc. That way you won't forget anything while there.

    There are two things I want to add about blood tests, because my local drs. didn't understand these critical aspects:

    (a) While only SEVERAL autoantibodies are listed as "immunologic disorders" in the SLE criteria (anti-ds-DNA, anti-Sm, antiphospholipid, lupus anticoagulant, fasle-positive syphilis), there are actually QUITE A FEW MORE that may be seen in lupus. But because these five are considered quite "specific" to lupus, they make the list while others do not. So thorough drs. thus test for *everything* possible, not just these 5.

    (b) Some tests rise & fall with flares, thus drs. may not find supporting proof from tests on the first try---and should retest if symptoms persist.

    Please drop a line to let us know if this is the sort of initial response you're looking for, OK? Hopefully others here will add more. Meanwhile, I send my best wishes. Bye for now. Sincerely, Vee

     
    Old 06-22-2008, 06:19 AM   #4
    jo237
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    Re: New here. 1st appt looming! Could do with some advice please

    Veej thank you so very much you have been so helpful and informative. I agree that Drs dislike self diagnosing patients and I think your approach is far more subtle.
    I just feel having explored everything else that Lupus is a very real possibilty. My neurologist even said in a letter that the abnormal lumbar puncture pointed towards Lupus and now with the bowel problems and eye problems and the blood in the urine I am starting to think he could be right.
    Thanks once again. My appt is 16th July and I will let you know how I get on
    Jo
    xx

     
    Old 06-22-2008, 07:39 AM   #5
    VeeJ
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    Re: New here. 1st appt looming! Could do with some advice please

    Jo, I'm glad you posted back. I forgot to include GI problems. I had HORRIBLE malabsorption for 20+ years, but my symptoms were probably the opposite of what you've had. But it was interesting what my current rheumie asked during my first appt.: whether I'd ever had a GI blockage, then he mentioned "mesenteric vasculitis" as a quite serious GI concern.

    I'm certainly not saying you've have had that (am only a patient!). But I'm wondering if Dr. Hughes covers GI issues, to help you come up with some good GI questions. Like I said, he has a huge reputation, so anything he writes should command respect from any rheumie, anywhere on this earth.

    And maybe someone here from the UK could help you zone in on GI issues before your appt. You could even start a new thread with some eye-catching title, to call attention to what you're after.

    Wishing you a calm few weeks before your appt.! I hope you get off to a very fast start. Best wishes to you, Vee

     
    Old 06-22-2008, 01:05 PM   #6
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    Re: New here. 1st appt looming! Could do with some advice please

    Hi jo I also have a a fecal imaction back in febuary the 3nd I remember it well, I have never been in so much pain I ended up with a tear and hemorriods witch I still have I am still having to push to go and it scares me so much I am on lactulose and eating lots of fruit and veg.

    I do have a underactive thyroid which is Auto-immune!!

    I am having tests for Lupus so far I have positive ANAs, abnormal RA facto, abnormal IGG, IGM and IGA so I am looking into (APS) I have lumps on some of my fingers and get pain in them and my hands. my FSH was 89.51 so I am in the menopause I am 43 years old!!

    I do feel for you when yuo know your own body and we have to fight to get to the bottom of things. I also have in the last year found out that I am alergic to so many things one being nuts well all nuts, fish, dog, cats, trees. grass and lots more... I hope you get the help that you need maybe we can help each other.. what did they do when you had your impaction??


    take care ...Mad Maz

     
    Old 06-22-2008, 01:08 PM   #7
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    Re: New here. 1st appt looming! Could do with some advice please

    Hi jo I also have a a fecal imaction back in febuary the 3nd I remember it well, I have never been in so much pain I ended up with a tear and hemorriods that I still have. I am still having to push to go and it scares me so much I am on lactulose and eating lots of fruit and veg.

    I do have a underactive thyroid which is Auto-immune!!

    I am having tests for Lupus so far I have positive ANAs, abnormal RA facto, abnormal IGG, IGM and IGA so I am looking into (APS) I have lumps on some of my fingers and get pain in them and my hands. my FSH was 89.51 so I am in the menopause I am 43 years old!!

    I do feel for you when yuo know your own body and we have to fight to get to the bottom of things. I also have in the last year found out that I am alergic to so many things one being nuts well all nuts, fish, dog, cats, trees. grass and lots more... I hope you get the help that you need maybe we can help each other.. what did they do when you had your impaction??


    take care ...Mad Maz

     
    Old 06-22-2008, 11:39 PM   #8
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    Re: New here. 1st appt looming! Could do with some advice please

    Hi Mad Maz, thanks for your reply. Impaction I agree is so painful. I have had three since December and the pain on my left side is there day after day. I am due to have a colonoscopy in the next couple of weeks but they suspect it is due to a thickening of the bowel wall as all the xrays showed a hideous extended and mishapen bowel... mmm lovely!!. I hope you are feeling ok at the moment and your tests go well. Please, yes, keep in touch and I will let you know how I get on.
    I have to say that I am secretly quite worried about the repeated GI problems and also blood in urine and really hope I get some answers soon.
    Take Care
    Jo
    xx

     
    Old 06-23-2008, 04:50 AM   #9
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    Re: New here. 1st appt looming! Could do with some advice please

    Jo & Mad Maz, I just saw (mainstream source) that fluid retention and swelling can cause intestinal obstruction in SLE. However, in contrast to blockage due to mesenteric vasulitis, it's considered much less serious, although the pain aspect can be miserable.

    ...for what this is worth to you both as you compile questions for your drs. GOOD LUCK. With fingers crossed for you both, Vee

    P.S. Mad Maz, same source says premature menopause is common in SLE. I started skipping periods at age 44 & was Dx'ed post-menopause. (One very nasty joke on me, as I felt it---many tears shed....) Again, good luck to you! V.

     
    Old 08-21-2008, 06:16 AM   #10
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    Re: New here. 1st appt looming! Could do with some advice please

    so sorry for what you've been going through...
    you should never be afraid to ask your dr's to check for anything!
    even the best dr's are not well informed of autoimmune diseases...
    and if they don't "see" anything wrong, then everything must be "fine"
    many of your symptoms are definitely lupus related...
    have the dr's check your complement levels... esp. C1q, C2, C3 & C4--
    it is also possible that your symptoms are due to vasculitis (which can overlap with lupus). find a good rheumatologist who doesn't brush off your symptoms and tell you it's just CFS of fibromyalgia...
    fyi-- my daughter (who's 10) has vasculitis-- uveitis, episcleritis, inflammation of any of the blood vessels (which can effect any of the organs) can occur at anytime, and symptoms are most severe in the evening. also, extreme fatigue, arthralgias and angioedemas are common symptoms.
    the one symptom you mentioned-- sun sensitivity is a big red flag for lupus--
    best wishes

     
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