Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: Diagnosed Today, Symptoms For At Least 6 Years

  1. #11
    Join Date
    Mar 2009
    Location
    Dallas, Tx
    Posts
    1,859
    Thanks
    145
    Thanked 411 Times in 337 Posts

    Default

    Hi Geo,

    Welcome to WHL. As you have already seen, this is an awesome forum.
    I am sorry you had to join this forum, because you have Lupus, but I am glad you are a new member in our family.
    If you have any questions, comments or anything, we are here for you.

    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).

  2. #12
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by GeoKasher View Post
    Good evening! I just found this forum tonight after getting the news today that I have Lupus.

    I have had symptoms since at least 2005 and finally found a doctor last month that would take me seriously and listen to what I was saying. Bloodwork and a 24-hour urine test ruled out an adrenal tumor and showed elevated ANA levels.

    My flare ups seem to start with massive weight gain (40 pounds in 3 months both times) with fluid retention, leading to pitting edema. My blood pressure fluctuates wildly from too low to, at one doctor's visit, 220/188! I have developed a malar rash over my cheeks and nose so that it looks like I'm always sunburned. Last week I developed a discoid rash on my chest in the neckline area. I often have bouts of severe fatigue and intermittent elbow pain. I also experience very frequent heart palpitations.

    I am scheduled for an echocardiogram tomorrow and will be wearing a harness for 24 hours next week to document what is going on with my heart. I have an appointment with a dermatologist next month (soonest I could get in). I am just relieved to finally have a diagnosis and know what I'm dealing with!

    How long do the discoid rashes tend to last? This is rather embarrassing since it's high enough that none of my shirts cover it. It's too warm to wear a turtleneck. LOL
    Hi Geo,

    Welcome to our lovely family at WHL who will help best we can and there's so many threads to venture through concerning the Disease to learn from, as somtimes issues arise where we have'nt got a clue what it maybe but there's always someone ready to help.

    Refering the weight gain ask to be checked out regarding your thyroid glands, as i have thyroid trouble and that can make you either lose weight or gain it and this is involved with Lupus...the malar rash (Butterfly rash) i had burning red and so sore mine took a while to move and i also have discoid Lupus and i am pleased your seeing a Dermo specialist as i'm under a great one and he run bloods on me to find out what i had which was also psoriasis and he put me on steriod based creams, they're excellent for removing rashes but you need a 6mths break regular as they're also an aging process but mainly to the face.
    The bouts of fatigue comes regular with Lupus and i also suffer the elbow pain, which was diagnosed wrongly for tennis elbow, it's quite painful and palpations can also happen that can come on through anxiety also but i wish you all the best with your appointment tomorrow.

    A flare can last from a few days going into weeks plus months it's according to how active the lupus is.

    Hugs your way Terry xxxxx
    Last edited by Peridot20_Gem; 07-13-2011 at 12:49 PM.

  3. The Following User Says Thank You to Peridot20_Gem For This Useful Post:

    GeoKasher (07-13-2011)

  4. #13
    Join Date
    Jul 2011
    Location
    Pennsylvania
    Posts
    41
    Thanks
    14
    Thanked 3 Times in 3 Posts

    Default

    Quote Originally Posted by Peridot20_Gem View Post
    Hi Geo,

    Refering the weight gain ask to be checked out regarding your thyroid glands, as i have thyroid trouble and that can make you either lose weight or gain it and this is involved with Lupus...the malar rash (Butterfly rash) i had burning red and so sore mine took a while to move and i also have discoid Lupus and i am pleased your seeing a Dermo specialist as i'm under a great one and he run bloods on me to find out what i had which was also psoriasis and he put me on steriod based creams, they're excellent for removing rashes but you need a 6mths break regular as they're also an aging process but mainly to the face.
    The bouts of fatigue comes regular with Lupus and i also suffer the elbow pain, which was diagnosed wrongly for tennis elbow, it's quite painful and palpations can also happen that can come on through anxiety also but i wish you all the best with your appointment tomorrow.

    A flare can last from a few days going into weeks plus months it's according to how active the lupus is.

    Hugs your way Terry xxxxx
    Thanks, Terry. I have had Hashimoto's for the past 21 years and have been on synthroid since then. I have my TSH levels checked regularly.

    I did get a call from the doctor's office today and she said that my echocardiogram came back "pretty good" and to make sure that I keep my appointment for the halter monitor next week.

  5. #14
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by GeoKasher View Post
    Thanks, Terry. I have had Hashimoto's for the past 21 years and have been on synthroid since then. I have my TSH levels checked regularly.

    I did get a call from the doctor's office today and she said that my echocardiogram came back "pretty good" and to make sure that I keep my appointment for the halter monitor next week.
    Hi Geo,

    So at least you know about your thyroid as alot of women don't and these can cause major issues, concerning your health and weight and i have my levels besides other bloods done every 6mths my GP is on the ball with me.

    Nice news about your echocardiogram but like they said still attend your appointment mate.

    ((Hugs Terry)) xxx

  6. #15
    Join Date
    Jul 2011
    Location
    Birmingham, AL for 30 yrs
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Geo, I am a newbie too, but have been dealing with mixed connective tissue disease (2005), positive lupus skin biopsy (2007), secondary Sjogren's syndrome diagnoses (2008). All have similar symptoms, and no cures, but are managable as long as you don't wait to call your docs. that's my problem, I wait till the pain is too bad. In March I couldn't tolerate the joint pain and requested I be allowed to go back on prednisone (5 mg). Doc said no problem. Still on it. But I also started a trial drug thru Achieve Clincial Research. It is a blind study, and I really can't tell that it is working after 2 months. Strong pain meds, like Ultram, don't really help, so I stick with ibuprofen & tylenol.
    I too have skin involvement, which is the largest organ in your body. Be sure to wear lots of sunscreen, stay out of the sun and flouresant lighting, when possible. It does change your life, but they will do more damage than just a rash. I have gotten a very dark tint on my car windows this year and it has help tremendously.
    Join a support group! If there isn't one in your area, start one! contact to find one is: www.lupus.org
    Let me hear from you!
    KALA

  7. #16
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Quote Originally Posted by kala View Post
    Hi Geo, I am a newbie too, but have been dealing with mixed connective tissue disease (2005), positive lupus skin biopsy (2007), secondary Sjogren's syndrome diagnoses (2008). All have similar symptoms, and no cures, but are managable as long as you don't wait to call your docs. that's my problem, I wait till the pain is too bad. In March I couldn't tolerate the joint pain and requested I be allowed to go back on prednisone (5 mg). Doc said no problem. Still on it. But I also started a trial drug thru Achieve Clincial Research. It is a blind study, and I really can't tell that it is working after 2 months. Strong pain meds, like Ultram, don't really help, so I stick with ibuprofen & tylenol.
    I too have skin involvement, which is the largest organ in your body. Be sure to wear lots of sunscreen, stay out of the sun and flouresant lighting, when possible. It does change your life, but they will do more damage than just a rash. I have gotten a very dark tint on my car windows this year and it has help tremendously.
    Join a support group! If there isn't one in your area, start one! contact to find one is: www.lupus.org
    Let me hear from you!
    KALA
    Hi Kala! Welcome to WHL. That is great advice that you just gave. In many ways it doesn't matter what name you give these AI diseases some of the issues are exactly the same. I am really glad that you have joined us. I look forward to getting to know you and welcome to the WHL family!

  8. #17
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default

    hi kala, and welcome.
    i saw your other thread.......
    nice to see you have started a support group in your area.

    i like this group..... we are a world wide support group
    hope you stay with us.

  9. The Following User Says Thank You to steve.b For This Useful Post:

    tgal (07-15-2011)

  10. #18
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by kala View Post
    Hi Geo, I am a newbie too, but have been dealing with mixed connective tissue disease (2005), positive lupus skin biopsy (2007), secondary Sjogren's syndrome diagnoses (2008). All have similar symptoms, and no cures, but are managable as long as you don't wait to call your docs. that's my problem, I wait till the pain is too bad. In March I couldn't tolerate the joint pain and requested I be allowed to go back on prednisone (5 mg). Doc said no problem. Still on it. But I also started a trial drug thru Achieve Clincial Research. It is a blind study, and I really can't tell that it is working after 2 months. Strong pain meds, like Ultram, don't really help, so I stick with ibuprofen & tylenol.
    I too have skin involvement, which is the largest organ in your body. Be sure to wear lots of sunscreen, stay out of the sun and flouresant lighting, when possible. It does change your life, but they will do more damage than just a rash. I have gotten a very dark tint on my car windows this year and it has help tremendously.
    Join a support group! If there isn't one in your area, start one! contact to find one is: www.lupus.org
    Let me hear from you!
    KALA
    Hi Kala,

    Welcome to WHL and nice to have you with us and i hope the threads on the site help you also in many ways and you sound so positive with Lupus the way your explaining yourself as if you've excepted it well.
    I've got A1 Diseases like yourself overlapping Autoimmune Diseases and i find it all a nightmare trying to cope at times with different issues, it can get you down sometimes.

    I wish you the best of luck concerning the clinical research your on and for painkillers they told me up to 4000mg a day of paracetamol besides my plaquenil i take.

    Hugs Terry xxx

  11. #19
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hi Geo,

    I hope your feeling fine since you joined and that your days as pain free as possible...keep we updated please.

    Love Terry xxx

Posting Permissions

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