Page 1 of 2 12 LastLast
Results 1 to 10 of 14

Thread: Hello Newbie and Awaiting diagnosis

  1. #1
    Join Date
    Feb 2010
    Posts
    31
    Thanks
    8
    Thanked 0 Times in 0 Posts

    Red face Hello Newbie and Awaiting diagnosis

    Hello

    Im new today

    Im undergoing test since augist 2009 for sle lupus,i have previously been diagnosed with inflammatory arthritis but treated as RA age 17.
    Then re diagnosed january 2008 as Sero Negative Rheumatoid arthritis.
    Then all changed Rheumy spotted Butterfly rash Augsust 2009.

    did brief test after Gp had done a ANA test was slightly postive.
    Then Rheumy re did same test negative.

    BUT still butterfly rash.

    seen by new Rheumy November 2009.
    diagnsoed fibomyaliga,and told definteley either Sle lupus or Rheumatoid arthritis sero negative still and may take some years to be sure.
    dads diagnosis took many years after mis diagnsois with fungal infections then he saw a dermy speicalist who did biopsy to see and was postive for dle.
    started on anti infalmmtoires age 17 then steriods injections occsiaonally worked fine full time.
    remisson age 23 discharged.

    re started up but wasnt aware signs then age 30 plus married and signs recurring via alot of infections.
    abscesses etc.
    re referred after hubby had major op finally took leap see new gp as old one struck off who id been trying tell im not well refer me and wouldnt.
    u know the hychodriac story they give u if visit to often.


    anyway

    new gp furious id left it so long tried anti inflamtoires this time did not work and so after 3rd visit referred me to a london hospital.
    as previously was outside london and seen private at first then nhs as so young seen asap at age 17.

    anyway on we go.

    so new rheumy after 1 month the above ra diagnosed put onto methotrexate as NSAIDS had not worked.steriods worked a treat had few injections while waiting for referral as hospital lost it 1st time.

    so now i have

    fibromylgia
    inflammatory arthritis so far non erosive

    rashes facial redness
    sun sensitive
    fever on off
    problem with lighting hospitals shops.

    giddiness
    chest trouble on/off
    joint pains
    muscle pains,fatigue.
    gynaecolgy problems diagnosed endometriois december 2009.

    seen occupational therpaist for hand therapy spring 2009

    had flat assessed and adapted 2009
    closed buisness down was massage therpaist but not giving up on that idea to re open.

    currently doing couple course 1 at time online to re educate myself so can go back to another form of work.

    skipping back to new rheumy

    hes added planequil 200 mg and is helpin bit with rashes,also added amitrilpine for fibro wow what a miracle sleep right thrw nite now little muscle pain which had got to point stopping me sleeping well.
    i do have pain relief take as required.
    im married 2 cats.
    and love have laugh.

    ohh my great gran and my gran all had lupus sle type.
    my dad has dle discoid type lupus.

    and alot other auto immune bits in family.
    new rheumy has reasured me not serious parts lupus for me at moment and will keep close eye on me.
    so he did urine test and lots bloods again. also xrays they fine.

    and a test for APS.
    gp does my mtx bloods monitoring every 4 weeks via local hospital.

    i also had physio last year for bad case tennis elbow,which does reoccur.

    So thats about ti really.
    nice meet u all.


    ohh and dad was diagnsoed 4 years ago but only when i was having tst for lupus first lot did he ask gp what he had as ddint understand what hed got an hey ho dle type lupus and then he remebers his gran my gran al ahd it.
    so ive told new rheumy all this and its now noted on family history alogn wiht aunties psrioac artritis and grans ra.etc

    seems to be helping alot with enw directions rheumy is taking with my care test etc.

    right now im experecing facial problems.
    umm like hives on cheeks,hot then stingy raised areas,along wiht few dry raised patches. hoping they stay eveident for rheumy app in 2 weeks.

    melly c
    Last edited by melly c; 02-19-2010 at 06:51 PM. Reason: spelling

  2. #2
    Join Date
    Dec 2009
    Location
    Atlanta Area - Dacula and Boca Raton
    Posts
    1,750
    Blog Entries
    10
    Thanks
    361
    Thanked 359 Times in 297 Posts

    Default

    Welcome Melly C,

    You'll find this is a wonderful group of people. Hopefully you will get a straight diagnosis soon. Have patience and remember that we are all here for you.

    Take care,
    Nonna

    Living Life to the best of my ability!

  3. The Following User Says Thank You to Nonna For This Useful Post:

    melly c (02-20-2010)

  4. #3
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Hi Melly,
    Welcome to WHL. You've had quite a runaround. You would think that with your family history, it would have been a lot easier to diagnose. If you read through the threads here, you'll find that many of us have been through many of the same frustrations. Feel free to join in the conversations here, and to ask questions. There's usually someone here willing to chat.
    Hugs,
    Marla

  5. The Following User Says Thank You to magistramarla For This Useful Post:

    melly c (02-20-2010)

  6. #4
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 78 Times in 69 Posts

    Default

    hi melly,

    welcome to our family. You have really been through a lot and starting at such a young age. I can tell by your report that you have learned how to stand up for yourself, and how to work with the drs. and their treatments. So glad you found us, and i hope you will keep in touch.
    Phyllis

    share a smile today

  7. The Following User Says Thank You to mountaindreamer For This Useful Post:

    melly c (02-20-2010)

  8. #5
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default

    Welcome to the forum and wow you have been through allot.Hope that rheumi see's your rash,take photo or video it on your phone for proof .Catch up with you soon.

    Love Amanda.xx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  9. The Following User Says Thank You to Angel Oliver For This Useful Post:

    melly c (02-20-2010)

  10. #6
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,590
    Blog Entries
    9
    Thanks
    1,464
    Thanked 876 Times in 551 Posts

    Default

    Hello and Welcome to our family

    I am so sorry to hear that you've had to endure the run-a-round! But I am happy that you found us and I hope that we can offer you some insight, understanding, and let you know that you are not alone!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  11. The Following User Says Thank You to Saysusie For This Useful Post:

    melly c (02-22-2010)

  12. #7
    Join Date
    Mar 2009
    Location
    Dallas, Tx
    Posts
    1,856
    Thanks
    145
    Thanked 409 Times in 337 Posts

    Default

    Hi Melly,

    I am sorry, that you are having such a hard time to get any answers.
    Most of us have been in that same boat for a while. There is hope, that you will find out and finally get help.
    Hopefully for you it will be soon.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  13. The Following User Says Thank You to debbie-b For This Useful Post:

    melly c (02-22-2010)

  14. #8
    Join Date
    May 2009
    Location
    NJ
    Posts
    305
    Thanks
    2
    Thanked 16 Times in 15 Posts

    Default

    Welcome.....what a story. Hang in there..I would take a few pics of the rash just in case it fades away by the time you go back to the MD. You can show them that it really was there!! Lots of great info here to be had.
    Andrea

  15. #9
    Join Date
    Feb 2010
    Posts
    31
    Thanks
    8
    Thanked 0 Times in 0 Posts

    Default

    Thank you everyone for such kind welcome

    rash has died down so didnt get to take photo,but if re appears i will do so.
    i shall have go at reading threw site bit.
    i did post 1st post on drugs section.

    thks again.
    melly c

  16. #10
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 78 Times in 69 Posts

    Default

    hey melly,

    this site is very user friendly...once you have traveled around for a bit, you will be a pro....so glad you joined our family.
    Phyllis

    share a smile today

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •