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  • I need help, I'm at wits end.

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    Old 12-03-2015, 07:11 PM   #1
    kslj23
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    I need help, I'm at wits end.

    I just spent15 minutes on this, to realize I was completely venting and deleted it all. then tried again for another 15 minutes and realized I did it again, so ill make this super clear and elaborate if anyone wants. I just really need help, I don't know what to do at this point.
    I'm SO sorry this is long, but please read it and help me.

    Symptoms starting from 10 years ago(puberty, I'm 22 now)
    FULL body joint pain.
    FULL body muscle pain and spams.
    severe muscle and tendon cramps
    randomly nauseated.
    IBS
    random severe constipation
    purge and splurge eating habits.
    insomnia
    Migraines lasting for days.
    muscle weakness.
    muscle atrophy
    uterine, bladder and rectum prolapse (they said this is because my muscle spasms are so severe in my pelvis it just couldn't do its job holding the uterus suspended.)
    Hot flashes
    heat rashes
    swollen lympnodes
    all symptoms of rynauds disease.
    overly dry tight skin.
    all day fatigue
    nuropathy
    vertigo
    major depressive
    general anxiety
    memory loss
    extreamly hard to concentrate.
    sharp rib/lung pain? when breathing randomly.
    spinal pain.
    sciatica
    --this is all I can think of with my current migraine eating away at me.

    test results so far:
    Ana tested 3 times over 9 months- 1:1280 homogeneous. 1:1280 speckled. 1:1280 homogeneous
    HGB and HCT juuuuust under normal levels.
    ESR - 11 after just getting off prednisone, 20 4 weeks later. range was 0-20
    Calcium lvl- just below normal
    Total protein and albumin level- cusp of low, going down from medium normal range over 6 months
    ALT-SGPT - just below normal
    trace to moderate blood and leukocytes in urine
    small amount wbc and rbc in urine
    Promtime just below normal
    Negative for RNP, SM, SS-A AB, SSB/LA, SCL 70, DS DNA.
    CCP- range is 0-19, I had 20 the first test, and 4 months later it was 35.


    now here is my problem. my rheumatologist and PCP are ignoring the Ana. so they said I have Fibromyalgia. but from everything ive read 1:1280 is highly un likely to be a healthy positive.
    they wont diagnose RA because while I was positive for ccp is a "mild positive" and I didn't have inflammation showing in my blood work.
    they've had me on celexa, Zoloft, amitriptyline, hydroxyzine, ambien, Cymbalta, gabapentin, flexeril, Percocet(after delivering) and every OTC they recommended. Ive been to physical therapy, pelvic floor therapy, and chiropractor.
    NOTHING HAS HELPED.
    What am I missing? should I get a knew Rheum? any ideas whats going on really? any ideas on what can help?
    I'm exhausted, physically, mentally, emotionally.
    I need help. and my kids need a real mom, not the shell I'm forced to be.

    Last edited by kslj23; 12-03-2015 at 07:37 PM.

     
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    Old 12-07-2015, 08:07 AM   #2
    ladybud
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    Re: I need help, I'm at wits end.

    Welcome, and I am sorry you are suffering so much at such a young age. All your symptoms, plus labs, point to an autoimmune disease, likely to be lupus with possible RA in addition. You definitely need a new rheumatologist. Your rheum is ignoring many strong clues, and not treating you for what is going on. I would gather all your labs, print up this list of symptoms, and head to someone else who comes recommended as a GOOD Dr. You can and should feel much better with proper treatment. This is not just fibromylagia, and they are dismissing important clues to your diagnosis. I hope you get the best help and feel like a young woman should. You may not get 100% relief, but significant improvement in time.

     
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    Old 12-10-2015, 01:28 PM   #3
    VeeJ
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    Re: I need help, I'm at wits end.

    Hi. I'm just a patient, to put it mildly, but I have to say that I too am very surprised at several things. First, that's a high ANA, I think, and ANA doesn't elevate in "just fibro", to my knowledge. Second, I think that CCP is a VERY strong early indicator of RA.

    I also think that given your GI issues, you really should see a gastroenterologist. Some GI conditions can cause ANA to be positive, also some other AI-like values to elevate. And, unfortunately, I think there's no way of telling whether ALL your symptoms & labs stem from a rheumatological condition, or GI condition, or maybe something else as well. Stated differently: I think you need to go down *at least* 3 paths---rheum, gastro, and urologist---and ALSO make sure your thyroid values were checked recently. (Thyroid problems can co-exist, unfortunately.)

    There are some great lupus library books you can borrow. One discusses how lupus is differentiated from its "close cousins". As a result, when discussing how lupus is differentiated from RA, the author tells you a WHOLE LOT about RA and tests for it that go beyond labs (like X-rays to look for "mouse bites"). AND he also discusses many other AI's, like interstitial cystitis, Crohn's, ulcerative colitis, thyroid AI's, etc.

    What explanation were you given for RBC, WBC, and leukocytes in your urine? Were stones considered, or interstitial cystitis, etc.? (I've had stones, ugh.)

    I really hope you can get this moving in a better direction. The fact that you've had problems for > 10 years is really quite striking to me---makes me think the doctors should think about conditions that appear in early adolescence... So, we're really looking forward to hearing more & we're here whenever you want to talk. Sending hugs!

     
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    Old 12-10-2015, 01:35 PM   #4
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    Re: I need help, I'm at wits end.

    Has anyone talked to you about a neurological autoimmune disease? I have multiple sclerosis and have most of those symtoms. An a high ANA as well.

    It doesnt have to be RA or Fibro. It could also be MS or a number of other diseasess...maybe you want to go see a MS specialist, who is not only able to dx but also rule out MS and point you in another direction...

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    Old 12-10-2015, 02:44 PM   #5
    kslj23
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    Re: I need help, I'm at wits end.

    the original person who tested for ANA was a neurologist i saw for migraines.
    he never actually treated me, he just did an emg and said it was fine but couldnt rule out- let me find it and copy and past because i cant begin to remember-
    "There is no evidence of large fiber polyneuropathy or myopathy.
    A small fiber neuropathy cannot be excluded and requires further testing for autonomic fibers and a skin
    biopsy"

    and when i asked out the ANA he said it means nothing and its not a concern of his. when i told my ob ( i was 20 weeks pregnant at the time of the EMG) hes the one that said no its serious and made sure i saw a rheum. the neurologist then reluctantly referred me to this rheum.

     
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    Old 12-10-2015, 02:54 PM   #6
    kslj23
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    Re: I need help, I'm at wits end.

    Quote:
    Originally Posted by VeeJ View Post

    What explanation were you given for RBC, WBC, and leukocytes in your urine? Were stones considered, or interstitial cystitis, etc.? (I've had stones, ugh.)

    They told me "that happens" "it's normal" "not a problem."
    they ignore the rising ccp saying "oh that fluctuates daily"
    my concerns are pretty much being undermined and pushed under a rug.
    i think they forget that small percent, though indeed little, it still there and shouldn't just be told oh that happens everyonce in a while.

    my ob had referred me to a gi specialist repeatedly and theyd never call me to set up an appointment and theres no access to call them. its just ridiculous.

    would a urogynecologist be the same as a urologist? ive already been there for pelvic floor treatments from the prolapse and she said its caused from the severe muscle spasms. treatments werent working because the core problem causing the muscle spasms wasnt and shes was just getting ****** she couldnt do her job because the rhuem wasnt doing their job.

     
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    Old 12-15-2015, 08:18 AM   #7
    IndyFibro
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    Re: I need help, I'm at wits end.

    Hi, I am new to this board and just wanted to say I'm sorry you are having such a difficult time. It's frustrating when you feel so ill and can't get any answers.

    I don't have any medical advice but just wanted to encourage you not to give up.

    At my first Rheumatologist appointment yesterday, the Dr. diagnosed Fibromyalgia almost immediately. Unfortunately I feel like that is what they say when they don't want to take time to really dig into your situation. I made an appt. for a second opinion immediately, and I think you should too. Ask your friends, neighbors, co-workers or a physician referral network - but don't give up until you are getting the health care you deserve.

    You are doing the right thing for your kids - take it one day at a time. You are not alone!

    Take care.

     
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