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    Old 10-23-2004, 07:57 AM   #1
    MarianJ
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    How Long For a Diagnosis?

    Hello Everyone
    I have read the sticky post on, "Criteria to Diagnose Lupus." I believe their may be a slight possibility that I may have Lupus. I have absolutely know idea if my Rheumatologist is even looking is this direction or not as he really doesn't tell me much. I only started to see him this past February when my neuro surgeon referred me to him to rule out Fibromyalgia. At my first visit he ran a small amount of blood work because my iron count was extremely low. He did find that a had a sed rate of 37 and my ANA was normal. At my next appointment he did give me a diagnosis of Fibromyalgia and prescribed me Bextra and Effexor. Since then my pain has gotten much worse and I have developed arthritis in shoulders which was confirmed by x-rays in his office. He then diagnosed me with Tendonitis in rotator cuffs and said that I may develop frozen shoulder. He also ran more blood work and I also had an elevated CRP. I haven't gone back yet and I believe that I have frozen shoulder in both arms.

    Over the years I have had the Facial Rash. I have had to buy expensive make-up to try and cover this and it doesn't always work. About 7 years ago I did have Pleurisy and that was extremely painful. I have had much hair loss over the years but I thought that could possibly be from age, although I am only 40, I just feel much older. I have joint pain throughout my entire body. My Rheumatologist has told me that the Bextra is not working for me and I will need something much stronger. He did give me a script for a seven day supply of steroids with a refill that didn't work for my pain or inflammation. I have an appointment to see him again next month.

    I realize that it does take time for the doctor's to sort out all of a patient's symptom's and test result's before giving a diagnosis. But I was wondering if my situation sounded familiar to anyone and if so, approximately how long did it take for your doctor's to give you a diagnosis. I also realize that my symptoms could also be something could mimic Lupus and I could get a diagnosis of something else. Thank you all for your time.
    Jeanne

    ____________________
    ~LUMBAR~
    Posterolateral Fusion & Infuse with Laminectomy & Discectomy on L4,L5,S1 June 2003
    Instrumentation = 2 Rods, 6 Screws, 2 Disc Spacers
    Lumbar MRI 1/20/04
    Impression:
    Small amount of post operative fluid collection at level L4 which does not appear to communicate with the thecal sac.
    Encasement of the thecal sac at L4-5 level by enchancing soft tissue, consistent with epidural fibrosis.
    Displacement of the left S1 nerve root, consistent with epidural fibrosis.
    Lumbar Myelogram 2/26/04
    Impression:
    Mild indentation on the subarachnoid space is noted at the level of L4-5 & L5-S1 where there is non-specific soft tissue slightly displacing the subarachnoid space.
    Lumbar Post Myelogram 2/26/04
    Impression:
    L4-5 non-specific soft tissue is noted in the dorsal & ventral epidural space..
    L5-S1, there is non-specific soft tissue noted in the ventral epidural space slightly displacing the dural sac posteriorly.
    EMG 9/13/04
    Distal Peroneal Neuropathy Bilaterally
    Bilateral Chronic L4 versus L5 Radiculopathy
    ~CERVICAL~
    Straightening of the Normal Cervical Lordosis.
    Mild Congenital Narrowing of the Spinal Canal.
    C4-5, C5-6, C6-7 Herniated Discs
    C4-5 & C5-6 , Cord Flattening at these levels.

    Fibromyalgia, Arthritis, Bursitis, Tendonitis, Diabetes,
    Anemia, Asthma, Acid Reflux, Migraine's

     
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    Old 10-23-2004, 08:42 AM   #2
    lovemythreeguys2002
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    Re: How Long For a Diagnosis?

    HI...it sounds like it might be Lupus to me, sorry to say...you do not have joint pain with fibro, especially all over. Do you know what you ANA actually was? They told me my first one was normal also and it was 1:80, so that was a low positive. When was that ANA done?

    With the sed rate, and other things, something else is going on with you....don't wear any makeup the next time you go and see what the dr says about your face, has he commented before?

    My DX took 18 months from when my very first symptoms showed up.

    Take care
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    Old 10-23-2004, 09:24 AM   #3
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    Re: How Long For a Diagnosis?

    Hello, "Tomorrow".

    Like LoveMyThreeGuys, I think you should keep on pursuing answers from your rheumie. And if you get nowhere, perhaps you could see a different rheumie. Do you know if your current rheumie has any substantial number of lupus/other autoimmune patients?

    It took me 8+ years---or maybe a lifetime?---to get a Dx. I'm in the *intermediate subset* of lupus, called subacute cutaneous LE, abbreviated "SCLE". The word "cutaneous" is misleading in this context, though, as symptoms can extend through the whole range of SLE symptoms, though the worst (kidney & CNS) occur with less statistcal frequency & severity, it is believed.

    Anyway, your symptoms are familiar. I also had migraines, anemia, joint pain, stiffness, and rashes. But my rashes were all nonscarring circular lesions on my torso and upper arms, NOT the "malar" facial rash associated with SLE. The rashes I had are associated with the SCLE "subset".

    I've never had pleurisy, but I've had pneumonia several times (not exactly proof of anything)---and convulsions. Bouts of elevated ESR & persistent low-grade fevers. A TON of irritable bowel syndrome, enough to be hospitalized several times. Esophageal spasms. Kidney stones. Lots of UTI's. Tingling (neuro-like) sensations (lah, blah, blah )

    I saw numerous local specialists (dermies, rheumie, neurologist, cardiologist, gastroenterologists, urologists, etc.) After 8+ years of the rash & worsening nonsense, I sought a teaching hospital rheumie, who Dx'ed me in *less than 4 weeks* and put me on Plaqeunil.

    The Plaquenil has helped me a LOT; but I still have bouts of fatigue, upset digestive system, etc. On a VERY positive note: a lot of my other problems have receded greatly! Many people benefit hugely, though not "perfectly", from treatment, plus sun protection (essential if it's lupus).

    Anyway, I hope what the others post back will prove useful to you; and that you can get answers for whatever is causing all your symptoms, then some really good treatment! I send my best wishes. Sincerely, Vee

     
    Old 10-23-2004, 11:27 AM   #4
    Sampy123
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    Re: How Long For a Diagnosis?

    Vee,
    You mean after all this time, the Plaquenil still upsets your system? I thought it was something that passes after awhile. I'm not complaining, the weight is falling off of me - and as Martha Stewart would say, " it's a very good thing." Just wanted to say hello.

    Shari

     
    Old 10-23-2004, 12:52 PM   #5
    VeeJ
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    Re: How Long For a Diagnosis?

    Hi, Shari!

    I didn't write that very clearly, did I? NO---it's not the Plaquenil that upsets my system. When I go into a flare (fatigue, headaches, joint pain, low-grade fever, etc.), it's THEN that I often also get GI upsets. Just part of the way I flare, I think.

    I had a TON of IBS-type problems before the Plaquenil, so this is MILD in comparison. Thus I always lose weight during a flare-up---not in a good way and without trying and not wanting to do so.

    Sorry for the confusion. Too much baseball, too little sleep! All my best, Vee

    Last edited by VeeJ; 10-23-2004 at 12:53 PM.

     
    Old 10-23-2004, 01:32 PM   #6
    Sampy123
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    Re: How Long For a Diagnosis?

    Vee,

    I hear you on the lack of sleep!!! Those ballgames lasted all night! Thanks for the clarification.

    Go Boston!

    Shari

     
    Old 10-27-2004, 06:44 PM   #7
    MarianJ
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    Re: How Long For a Diagnosis?

    Hello Lovemythreeguys & Vee
    Thank you so much for sharing all your information and knowledge with me. I am very sorry that you both have been diagnosed with Lupus.

    I never found out what my ANA actually was. I do have an appointment on November 9th and my husband will be taking me as I can know longer drive. If I get a word in, I will ask about the ANA. My husband is already upset with my doctor as he never ordered and MRI of my arms and it has gotten to the point that I can't do many things with them. I am only typing now as I have pain meds and pain patches. I can't even wash or brush my own hair anymore. And it is very difficult to put on a shirt or jacket. And for now my driving days are over.... But the way that I look these days I haven't been bothering with the make-up either. So my rheum will get to see the real me....lol

    I have also been seeing many different specialist including, neuro surgeon, rheumatologist, cardiologist, gastroenterologist, vascular, podiatrist, dermatologist, nutritionist, physical therapist, pain management and urologist. Now they want me to see a neurologist and perhaps an orthopedic surgeon. When does it end.... Vee, it looks as if we have seen many of the same specialist's. In the last sixteen months I have had three surgery's. And I think only one of them actually helped me.

    As for the sun protection, does this have something to do with the photosensitivity? I am hoping that I am not sounding stupid here.... If so then at least I gave everyone a much needed laugh... When I was reading the criteria to diagnose lupus that was one of the symptoms and I had never heard of that term and didn't get around to researching it yet.

    Again, thank you for all your help.
    Jeanne

     
    Old 10-28-2004, 03:30 AM   #8
    Sampy123
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    Re: How Long For a Diagnosis?

    Jeanne,
    Photosensitivity for people with lupus means that within a very short time of being exposed to the sun's rays, one gets sick. You don't even have to be standing directly in the sunlight, it's exposure to the UVA and UVB rays. Meaning a noticeable change in joint pain, nausau or malar rash. That's why many of us need to wear sunscreen. And by the way, no question is too stupid to ask. We are all here to learn and share infomation. Hope this helps clarify it.

    Shari

     
    Old 10-28-2004, 04:43 AM   #9
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    Re: How Long For a Diagnosis?

    Dear Tomorrow (Jeanne),

    Well, I DID laugh---but NOT for the reason you anticipated. I loved the way you FORMATTED your note, the colors, the centered text, etc. You write one neat post! Brava! All of us now look like mere neophytes.

    To more serious matters... I just caught on your earliest post your mention that X-rays had picked up evidence of shoulder damage. Rheumatoid arthritis can erode joints; Dr. Wallace [famous rheumie who wrote a fine book on the subject; many of us here have this book & so do bookstores & libraries] says RA takes what appear as little "bites" out of bones. Some people do have symptoms of both lupus & RA, he says, and strictly speaking do have both diseases... (This thought is NOT intended to scare---maybe just grist for more very blunt questions to pose to your drs.?)

    More thoughts on "photosensitivity"... Just as Sampy123 says, it is one of the 11 diagnostic criteria for lupus. In photosensitive people, the immune system goes into "hyper" mode, with bad effects. The effects may build over time and may vary by incident. e.g., you may start hurting the same day---or days or weeks later. Pain may occur in elbows, then move to the arms or knees (lupus joint pain is often "symmetrical" but can dart around unpredictably). You may sprout a facial or body rash quickly---or after time has passed. i.e., there are no rules on timing---it all depends on how quickly & strongly your immune system mounts its (improper) response to the UVA &/or UVB exposure.

    In my own life, I noticed in the 1970's that I'd often get headaches after sun. By the 1980's, upsets stomachs also. By the early 1990's, reddish skin welts that didn't itch but looked like mosquito bites. By the mid-1990's, those same welts started "morphing" into circular rings, mainly on my upper arms, underarm area and back---but the rash would go full-blown maybe as long as *three months* after summer sun, so I *wasn't* thinking, "Hey, I bet sun is doing this." Many dermies, GP's, & other specialists later, I was finally Dx'ed with lupus---in June 2000.

    FYI, I know one woman with SCLE who had MANY shoulder problems and multiple surgeries, too. But I don't know the root cause, meaning whether her shoulder problems were "lupus-caused". I do know that once she got the lupus Dx'ed and under control, her pain levels came down considerably. She'd been flooded with pain narcotics---which only "mask" pain but won't alter the underlying cause IF it's lupus or RA (or whatever).

    I myself was just hitting the point of BIG pain when I finally took myself to a city rheumie. And about 2 months into the Plaquenil, I had a "last hurrah" of my worst pain ever---shoulders and elbows that lasted for several days. I cowered in utter disbelief: that pain was a total show-stopper. So based on my *small* taste of big pain, I can fathom (in part) how you must feel right now---and truly hope you can get the help you need quickly.

    I really hope your Nov. 9 appointment goes well & takes you to a new level of understanding & help. Please post when you are able. Sending all my best wishes to you, Vee (P.S. Your husband sounds like a real trooper. Mine was for the most part---terribly confused as we both were. Best wishes to you BOTH!)

     
    Old 11-10-2004, 06:22 PM   #10
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    Re: How Long For a Diagnosis?

    Hello Everyone
    I had an appointment with my pain management doctor on Nov. 4th. She sent me for MRI's of both shoulder's, and also referred me to an orthopedic surgeon. I do have the films and both reports. It seems not only do I have two frozen shoulder's. but I have a benign tumor in each shoulder in the spinoglenoid notch. Also a tear of the superior labrum is noted on each shoulder both anterior and posterior to the long head of biceps origin. And they also saw the tendinopathy. Well, I guess this explains all my pain. I do have an appointment with the orthopedic on Friday.

    I also saw my Rheumatologist last night. He was a bit surprised by the findings of my mri's. He also reviewed my last blood work-up with me. I told him that I had already gotten the test faxed to me and noticed that I also had an elevated crp. He then said that he also did another sed rate and that also increased from 37 to 57. They had never faxed me that test result. So I then asked him if he has any idea yet as to what is going on with me and all my inflammation problems. He then said that he has narrowed it down to two possibilities. They are, SeroNegative Rheumatoid Arthritis & SpondyloArthritis. But he also said that he is leaning more towards the Rheumatoid Arthritis. (It looks like you were on to something Vee) Both my sister's have this. My mother has a positive Rheumatoid Arthritis Factor. I also did ask him if their is a chance that this could be Lupus and he said he doesn't believe so. He told me to stop my Bextra medication since it is not working for me and prescribed me, "Mobic." I am praying this med will bring down some of my inflammation. Wish me Luck.
    Jeanne

     
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