Page 2 of 2 FirstFirst 12
Results 11 to 16 of 16

Thread: Help! I'm scared and have questions!

  1. #11
    Join Date
    Jun 2006
    Posts
    194
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Kathy,

    That is a very cool site. Thanks for posting the link. It makes it easy to check everything you take and all intereactions.

    Thanks!

  2. #12
    Join Date
    Aug 2006
    Location
    Washington
    Posts
    5
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hey Brandie,

    I bet... those purplish welts are stretch marks. I know they look uber huge and garish but thats what happened to me. The pain comes from skin stretching too quickly over a short period of time. Don't be afraid the pain will go away but it can take like a year for the marks to start to fade.

    That's how long its taken mine which were an angry red purple but are now fading to light purple and white. The were huge like 4-10 inches and made my abdomen look like a zebra. It freaked me out too. Also on my feet/ankles and calves and thighs I got smaller snakey light purple marks. The make the skin look distorted. One of the things that can help them go away quicker is vitamin e oil and lotion.

    Mine were caused by edema, that's water retention caused by the kidneys not retaining protein which controls the water retention in your body. Do you have any bloating/swelling? Rapid weight gain over a short period of time? With me I gained 60 lbs in 3 weeks no joke. Thats why my skin stretched. I thought I'd channelled the spirit of the state puff marshmellow man although my family called me michelan man. I was horrified. With water pills, dietary changes, and some remission the marks stopped hurting and became soft distorted patches of flesh which in time started to fade. I've had flares but no new marks since that happened a year and a half ago. Oh also prednisone can cause these kind of marks too and at the time I was on 60 mg. That's alot! It's not an allergic reaction, just an unpleasant side effect.

    When you see your specialist ask him if its a rash or strange stretch marks. Does it seem a rash or marks to you? Cause like I said vitamin e oil and lotion help loads. I didn't use them and my marks started to fade in a year. If I had used them earlier they prolly would have faded in 6 months or less.

    Good luck! Hope this helped...
    If life makes you a vampire, try sunblock.

    Of all the things I miss in life I miss my mind the most.

    If you happen to find my marbles please send them back express mail!

  3. #13
    Join Date
    Apr 2006
    Location
    Huntsville, AL
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Problems w/ my doctor

    Thanks everyone for your help! Unfortunately I called my doc this morning and his nurse informed me that "it was a specialty clinic and they don't accept walk-ins or work-ins". But still she worked me in for next Wednesday. I guess I need to look for a Rheumatologist I can see when things go wrong and to keep check of my lupus. Does anyone know a good one in Birmingham, AL? I have been looking at the UAB website and they have 3 docs that specialize in Lupus I just don't know anything about them. As far as my purple lesions its more likely that now that my d-dimer is at 10,000 some of my veins my be swelling up under the skin. Really they are only a tiny percent of why I feel like I need to see my doc soon. But I haven't gained any weight or had bloating that would cause these to be stretch marks. They appeared right after my flare began over a month ago. As long as my d-dimer continues to run extremely high the more I feel like I'm running up hill in one of those heavy x-ray vests. This flare is continuing to get worse and I'm getting very discouraged that its not going to end.

    Thanks,
    Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

  4. #14
    Join Date
    Aug 2006
    Posts
    1,574
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default Brandie, how close are you to Chattanooga?

    I know several of the women here have been to UAB and it seemed like a lot of them had a negative experience - mine at the Kirkland Clinic certaintly wasn't very helpful. It's been such a long time since I was in Huntsville, I can't remember which other towns are close to you - usually when I go to Birmingham I'm coming from Chattanooga.

    If you go to the American College of Rheumatology Website at www.rheumatology.org - their "find a rheumatologist" search lists 6 rheumatologists in Huntsville - along with contact information and a brief description of their practice. They also show some in Gasden and other parts of North Alabama, so you might be able find one closer than Birmingham. My niece lives in Huntsville but I'm not sure which doctor she goes to.

    If you do a website search on this website for UAB or Birmingham you can probably find the earlier posts about people's experiences at uAB or Kirkland.

  5. #15
    Join Date
    Apr 2006
    Location
    Huntsville, AL
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks! Actually I live in Huntsville myself and have had a terrible experience with a Rheumatologist here. Before I was finally diagnosed with Lupus by another doctor the Rheumy in Huntsville said that perhaps all this was in my head and that I shouldn't bother seeing someone until I have real symptoms. 2 months after that I was in the hospital for 2 weeks and nearly died so I guess he was wrong. My problem with finding a doctor is that I have an Extremely Rare genetic condition that scares most doctors off so I have to stay in a university medical system. I just don't know what to do anymore--after fighting to get a diagnosis and seeing a million doctors now I'm out looking for a new one again. But I need a doctor who can see me when problems arise not work me in a month later. If anyone has any recommendations even if its out of state I'm willing to listen and luckily my insurance would cover it.

    Thanks,
    Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

  6. #16
    Join Date
    Aug 2006
    Posts
    1,574
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    If you have any friends who are nurses, ask them who they would go to - nurses generally have the best scoop on doctors and know which ones to avoid.

    You might also ask your genetics specialist for a recommendation or referral - he would probably know the doctors most likely to be knowledgeable of your condition.

    In addition to UAB, you might also consider Vanderbilt University Medical Center in Nashville TN. They have a number of speciality outpatient clinics including a genetics clinic, and the drive shouldn't be much longer than Birmingham. Although Chattanooga is a lot further away, Erlanger has a good reputation as a teaching hospital because it's associated with the UT School of Medicine.

Posting Permissions

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