Home Forums Personal History and Progress Threads My downs and ups on the Road BACK..

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  • #301576
    Anna
    Participant

    I thought it was time to start my journal, to share my story, my ups and downs, ooops, let me fix it, my downs and ups!!!!

    After having my first child 3 years ago, I was diagnosed with Hypothyroid. Then about 9month later I had a very bad pain in my right toe, at the same time found out  I?m pregnant again with my second child (they are 18 month a part). I didn?t do any tests on the toe (no x-rays,CT, MRI), and by 3rd month of my pregnancy the toe pain went away.

    1.       9 months after my second child, the left toe pains started, then right toe cameback, then wrist, and thumb).

    2.       3month later did bunch of blood work, two of them comeback positive—ANA(1:380) and SED rate(60).

    3.       Then had many other tests by Rheumatologist now and all are negative (Lupus, SD, Lyme, RF, CCP?) . The pain in the right wrist was really bed, so I did MRI—-which strongly suggested RA.

    4.        I was offered the TOXIC drugs–RA drugs.  I?m scared, can?t sleep, crying all day, can?t look at my kids without a tear in my eye. With the history of positive PPD I knew I can?t afford to suppress my immune system.

    I WON?T!!!  I don?t want to take a chance to have a cancer, damage or kill my liver, kidneys or any other parts of my body, and that is what these TOXIC drugs do or could do.

    My thought was ?I rather loose or replace a joint in the future, then take a mother away from my kids!?

    I got more scared when I had to ask for a help to change a diaper on my child cause of pain in my wrist.

    That is where this site came in and my Road back started.

     

    So, my wrist/hand symptoms started in                         05/08

    I started on AP protocol with RB help on                        09/08

    In 30 days, almost pain free and SED(19)                        10/08

    After going through  stress my symptoms comeback        11/08

     

      It?s been 3 month since I started AP, after 1 month on AP I was almost pain free, and that is when I made a mistake to see a new rheumatologist for another opinion. After the very stressful visit my pain came back and stronger than before.  I have to mention that my pain involves one wrist, base of the thumb on the another hand, and a big toes. The pain in my hands is constantly (dailly) migrating within millimeters from prior spots.  Lot of hair loss and weight loss.

    The AP doctor that I saw this Friday (3month after AP) is not happy with the pain I still have. She said if AP would worked, you should of have less pain or no pain after 3 month. She is into AP and does trust that AP kills the RA bugs!!!

    I suggested switching to pulsating (not every day) but she didn?t agree with that.  She doesn?t think I would benefit as much as from the everyday dose.

    I do have good days, with less pain, especially in the last few days..

    I?m awaiting on my 3 month blood results?..

    #323132
    Anna
    Participant

    well 6mo on AP, it's a rollecaster!!!! And I'm not sure I know the pattern yet.

    I had great days and really bed, MSM did wonders in the beginning and not that much any more.  I want to increase the intake, will see if I could, no luck so far. Every time I try to increase I get buzzzzzing.

    Still same areas of pain, wrist, base of the thumb and the toes.  Usually it attacks one area more then others. One week or two  my thumb could be on the fire and the rest are OK, and then few weeks later it's the toe that kills me.

    My mood goes from optimistic to pessimistic very much depends on the pain i am in.

    Some days I think I got it, I beat that disease, I won, and the other days i'm thinking, when will I have to replace my joints…..and how worse could my condition gets.

    End of the march will have new blood results but most of my numbers are normal already so not sure that would help. But as long as the numbers wouldn't increase I guess there is a reason to celebrate.

    I just learned about new AP doctor in my area, might a good idea to see him, however, how much more he really can do????    Will update at the end of march….

    #323133
    Anna
    Participant

    Over 9 months on AP.

    I think I got major brake through, I think, but I'm very scared to say it loud……..

    I'm off and free of ibuprofen for a few weeks now.
    I'm free of pain in my toes and thumb.
    The pain that left is in my wrists only and it's not restricts me from my daily routine, my job, and my kids!!!!
    Basically it appears to be in my case that it took 9month to improve in small joints (fingers, toes).
    There is also improvement in wrists after 9 months of UPPS and DOWNS.
    Will update in 3 months or so.
    But I'm happy, very happy….

    #323134
    Anna
    Participant

    results from 9 month  on AP blood test:

    SED—28
    CRP—1.3

    everything else WNL (normal/negative)

    #323135
    Anna
    Participant

    small update-10 month on AP:

    still doing good here!!!!!!!!

    Left wrist pain almost Gone, when it flares-it's very mild.

    Right wrist got much better since 1 month ago,  but still sometimes with clicks and tender.

    I would say 80% better all together. 

    Am I smilling? How do I feel? I can't even put it in words… 🙂

    Will update later.

     

    #323136
    Anna
    Participant

    over a year on AP, 1y2mo

    All blood work is negative.  I was doing very good, soooo…..

    Ap DR recomended to move from 2 minocin (i take BRAND)a day to 1 a day.

    did this for 1.5 weeks and got more pain , tenderness, now I'm back on 2 pills a day and it's getting much better.  I haven't told this to My AP DR yet….

    MSM 2 tea spoons a day at 7am and 2 tea spoons a day at 5pm—GREAT stuff

    That is just facts

    life is very very busy, which is good,  i get here now only 1-2 a month.

    will update later..

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