Results 1 to 10 of 11

Thread: Diagnosed with Raynaud's

Hybrid View

  1. #1
    Join Date
    Dec 2010
    Location
    NY
    Posts
    4
    Thanks
    4
    Thanked 0 Times in 0 Posts

    Default Diagnosed with Raynaud's

    hello my name is Wende
    I have been diagnosed with Raynaud's I am currently seeing a Rheumatologist and am in the testing process. Had 2 appts with the rheumy thus far, my initial appt. was a question and answer session in which he told me I had symptoms of Raynaud's, that I do not have fibromyalgia as I don't have enough trigger points and told me I would need blood work.
    My second appt the doctor didn't tell me the results of my blood work, just asked me how my symptoms were. Told me he needed to put me on norvasc but that he couldn't as my blood pressure is normal. So instead I need to take an aspirin a day and return in a month or two and than he will decide the proper course of treatment. I don't understand what all this means. I went to him expecting to learn that there is nothing wrong with me and that my aches and pains are nothing but my imagination. Instead I got told I must return to him.
    I have some symptoms of Lupus but not the characteristic rash so I assume I don't have it. And I think he would have told me if my blood work said I have that would he not? I meant to tell him a few of the other symptoms I have that I didn't think were related but, according to some websites are.
    Can anyone tell me, if their doctors just used aspirin in their initial treatments for this? I would rather not take any meds but, if I do have this or some other autoimmune disorder I would rather I am being treated correctly by this doctor.
    I hope this post finds you all well or as well as can be with what you must have to live with. Sorry if any of this post is invasive and I will gladly answer any questions you may have.
    Thank you in advance for any information you can give.
    Wende

  2. #2
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    Hi Wende! I want to officially welcome you to WHL! Lupus and other autoimmune diseases are often difficult things to diagnose. It often takes months or years to get the answers that we are seeking. As we already discussed make sure to get copies of all of your tests and lab results. I take mine to every appoinment. I also have a 1 page summary of my history and 1 page history of "unusual" test results that I give to all new doctors. They are not going to take the time to look it all up and depending on how well my brain is working that day I may or may not remember what I need to say so I just hand it to them.

    You have no choice but to be your strongest advocate. Hang in there. It is tough but we will be here for you. I am really glad you found us!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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

    Default

    Hi Wende,
    Welcome to WHL. Keep reading through the threads here, and you will learn a lot about what is going on with your body.
    Raynaud's seems to be a fairly common thing with many of us, and it seems to accompany a lot of AI issues.
    Many of us have had frustrations with being sero-negative (the blood tests don't show it, but we have symptoms anyway).
    We've also dealt with docs who don't want to treat us unless something does show up in the blood work.
    It sounds like your rheumy is just trying to figure things out. Hopefully, he'll treat the symptoms, and not just rely on the blood work.
    Hugs,
    Marla

  4. #4
    Join Date
    Apr 2009
    Location
    Kentucky
    Posts
    1,165
    Thanks
    234
    Thanked 143 Times in 105 Posts

    Default

    Welcome to WHL =) I have Raynaud's too. Its really frustrating because for my its my worst lupus related problem. Meds really suck but make sure to take whatever your doctor tells you to take so it doesnt get worse. Im on Norvasc and a baby asprin also for it. Hopefully they'll figure out what, if anything else, is going on. I hope you find everything on here helpful =)

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

    mswendeu (12-20-2010)

  6. #5
    Join Date
    Aug 2010
    Location
    West Midlands, UK
    Posts
    388
    Thanks
    17
    Thanked 34 Times in 30 Posts

    Default

    Hello Wende,
    Welcome to our family the WHL and anything your not sure about there's loads of threads on different symptoms like tgal said.
    I have Raynauds also but a full history going back of alot of symptoms connected to the Disease but refering the Asprin your on about, i've been put on 75mg daily and that's ususally done to stop any form of clotting for a condition you must have and also if you've had Deep Vein Thrombosis like myself they put you on it to help clotting from forming again but at the moment i've pulled myself off it as i'm having trouble otherwise and under a gyno specialist also and i shall see my Rheumatology doctor about that in January refering the asprin.

    Terri xxx

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

    mswendeu (12-20-2010)

  8. #6
    Join Date
    Dec 2010
    Location
    NY
    Posts
    4
    Thanks
    4
    Thanked 0 Times in 0 Posts

    Default

    Ritzbit thank you, that was what i had intended on asking next. I actually did ask tgal in the forum chat if docs prescribed norvasc for raynaud's to help open up the vessels and seeing as you're taking that cocktail also I assume I was correct in thinking that. Althought my rheumatologist was very addiment in telling me "not baby aspirin, 325 mg aspirin per day. Not baby aspirin." to which i replied one 325 mg bayer aspirin per day not the baby kind! He said good! And Norvasc is what the rheumatologist would put me on if he wasnt worried my bp would fall to low. Although my new normal is between 120-140/80-100 it used to be a steady 90-100/70. Pain does strange things to a persons body, and I can tell when my pain threshold is being scrutinized as my bp goes higher although I don't feel anything more than an ache or so it seems and the color of my neck changes from white to blotchy red and darker the more pain is happening.
    At one point I was seeing an endocrinologist which my Gyn sent me to for Polycystic ovary syndrome. He comment on my slighter darker skin pigment in my armpits and at the crook of my elbows and after scrutinizing my blood work which he deemed normal at the time said its just a little darker nothing to worry about. My hair falls out in clumps i brush my hair 3 times a day, the hair falls out all day long, and when i brush i have to clean the brush 5 or 6 times, and even if i brush before i shower i still lose a drain cap full enough to give a barbie doll her full head of hair. I had the lab results faxed to me earlier today from the doctors office and according to all the results everything is normal or negative for the exception of my mch which isnt that much higher than normal. Just means i should still be taking my vitamin b12 I guess. So now I am at a loss. I have Raynaud's but my blood work doesn't say that! I don't get it. My RF is 6 with normal being <14. Ana is negative. Is all this possible?

  9. #7
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    There is a small group of people that have ANA negative Lupus and there is an even bigger group of people whose ANA fluctuate due to being in or out of flares, medicines starting to work or a host of other things. One of the reasons that Lupus is so hard to diagnose is that our labs can fluctuate so much and there is no single test to tell you if you have Lupus of not

    Hope that helps!
    Last edited by tgal; 12-21-2010 at 04:24 PM.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  10. The Following User Says Thank You to tgal For This Useful Post:

    mswendeu (12-21-2010)

Posting Permissions

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