Page 1 of 2 12 LastLast
Results 1 to 10 of 16

Thread: How long did it take you to get the "official" diagnosis?

  1. #1
    Join Date
    Dec 2012
    Posts
    11
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default How long did it take you to get the "official" diagnosis?

    Hey everyone!
    Just a curiosity on how long it took to get your "official" diagnosis...
    I have been to 8 different specialists in the past 3 months, and all I know is I "definitely" have skin lupus (based on skin biopsies), and "probably" have systemic lupus, and I "might" have other autoimmune diseases as well....
    I know all autoimmune diseases are fairly complex and hard to diagnose.
    My dad has Multiple Sclerosis, and I remember it took about 6 months before we knew "officially".. I think this is fairly common.
    Any input is appreciated
    Thanks.
    Susan

  2. #2
    Join Date
    Dec 2009
    Location
    Atlanta Area - Dacula and Boca Raton
    Posts
    1,736
    Blog Entries
    10
    Thanks
    361
    Thanked 354 Times in 293 Posts

    Default

    I've been treated for possible not quite sure Parkinson's since 2009. The lupus dia was easier given my medical history. I think malpractice suits have bmade doctors Leary to confirm things.

    Good luck

  3. #3
    Join Date
    May 2012
    Location
    Northern Rockies
    Posts
    284
    Thanks
    71
    Thanked 168 Times in 95 Posts

    Default

    I have gone two years without a diagnosis beyond "this is something autoimmune."

    Yesterday, my doctor even told me he didn't think I would be getting a definite diagnosis anytime soon.

    AI disease is truly squirrely when it comes to diagnosis. My best advice is to find doctors who will treat AI without a solid, specific diagnosis, and who will treat your symptoms. And then, we just have to be patient. Not let the lack of diagnosis take over our lives. For example, I see a chronic illness counselor who helps me grapple with the stress I sometimes experience from being undiagnosed and seeing doctors all the time.

  4. #4
    Join Date
    Dec 2012
    Posts
    11
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Yes, it's very frustrating...
    But I am trying to tell myself that it really changes nothing having an "official" diagnosis...
    My rheumy tried to start me on Plaquenil, but said that since I have cardiomyopathy, I will never be able to take it.
    And so I asked what other treatment can I take, and she said there is really no medication for me to take unless I have end stage organ failure.
    I just have to keep wearing my sunscreen and take Ibuprofen for my joint pain.
    So, even with a diagnosis, it changes nothing.... But, she is a very thorough doctor and sends me to several specialists to treat and test my different symptoms.
    I guess I just want to know what I have so that I know what I'm fighting against, ya know?

  5. #5
    Join Date
    May 2012
    Location
    Northern Rockies
    Posts
    284
    Thanks
    71
    Thanked 168 Times in 95 Posts

    Default

    Quote Originally Posted by NurseSusan View Post
    Yes, it's very frustrating...
    But I am trying to tell myself that it really changes nothing having an "official" diagnosis...
    My rheumy tried to start me on Plaquenil, but said that since I have cardiomyopathy, I will never be able to take it.
    And so I asked what other treatment can I take, and she said there is really no medication for me to take unless I have end stage organ failure.
    I just have to keep wearing my sunscreen and take Ibuprofen for my joint pain.
    So, even with a diagnosis, it changes nothing.... But, she is a very thorough doctor and sends me to several specialists to treat and test my different symptoms.
    I guess I just want to know what I have so that I know what I'm fighting against, ya know?
    Oh, I know exactly what you mean about wanting to know what you're up against. That is the one thing that can drive me nuts if I think about it too much. That, and wishing I had some way to know what might be coming my way.

    It's too bad about the Plaquenil (it really helped my skin lesions), but it's good that they're making sure you are well cared for.

    After my symptoms first started showing up, it took almost a year and a half for me to come to peace with not having a diagnosis. Part of this involved seeing a counselor, and part involved just plain time passing and getting used to the idea of being a medical mystery. I'm sorry you're a part of Team Unknown Disease-- no one joins this team willingly!

  6. #6
    Join Date
    Aug 2012
    Posts
    127
    Blog Entries
    15
    Thanks
    9
    Thanked 79 Times in 57 Posts

    Default

    Quote Originally Posted by NurseSusan View Post
    Yes, it's very frustrating...
    But I am trying to tell myself that it really changes nothing having an "official" diagnosis...
    My rheumy tried to start me on Plaquenil, but said that since I have cardiomyopathy, I will never be able to take it.
    And so I asked what other treatment can I take, and she said there is really no medication for me to take unless I have end stage organ failure.
    I just have to keep wearing my sunscreen and take Ibuprofen for my joint pain.
    So, even with a diagnosis, it changes nothing.... But, she is a very thorough doctor and sends me to several specialists to treat and test my different symptoms.
    I guess I just want to know what I have so that I know what I'm fighting against, ya know?
    It took me 6 days from actually getting the original rheumy lab request done,2nd appt and confirmation of secondary lab set results.

    I understand that your Dr is thorough in the fact that she has no issue referring you to other Drs for the testing/exploration of multiple system/symptom complaints but to be told that there are no other medications unless you have end stage organ failure is not correct.

    You may have to try several until you find one that you tolerate well but there are medications available that will help with joint,skin,pain and other complaints that go with this illness and you don't have to be at the end stage of organ failure to receive them.That is the purpose of using the medications like prednisone,Imuran,Arava,MTX to suppress the immunes response and keep it down enough that your immune system isn't allowed to rage out of control.

    If this is her attitude you may want to investigate pursuing a second opinion to see if a second rheumy can provide any additional information or alternatives that she is not other than referrals to other specialists.That would not be pro-active enough for me.

    Be well.And welcome!
    Last edited by ItsLupus2007; 02-14-2013 at 09:09 AM.
    SLE w/Sjogrens Overlap and Raynaud's diagnosed in 2007.Fibro in 2009.

    The Early Bird May Get The Worm But the Second Mouse Gets The Cheese.

  7. #7
    Join Date
    Sep 2011
    Location
    Amarillo, Texas
    Posts
    471
    Blog Entries
    1
    Thanks
    34
    Thanked 135 Times in 110 Posts

    Default

    My doctor just looked at me after like 5 minutes and said lupus. I was lucky in that aspect because I have the classic lupus, you know where the butterfly rash is prominent. I am so glad I didn't have to wonder what was wrong with me, i'm sorry your having to go through all that on top of being sick.

  8. #8
    Join Date
    Dec 2012
    Posts
    11
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Quote Originally Posted by Mica View Post
    My doctor just looked at me after like 5 minutes and said lupus. I was lucky in that aspect because I have the classic lupus, you know where the butterfly rash is prominent. I am so glad I didn't have to wonder what was wrong with me, i'm sorry your having to go through all that on top of being sick.
    I also have a prominent butterfly rash, and even then the rheumy made me go and have it biopsied to be 100% sure. And I know I meet the criteria to have systemic, but I guess she thinks that my blood work would be worse?

  9. #9
    Join Date
    Sep 2011
    Location
    Amarillo, Texas
    Posts
    471
    Blog Entries
    1
    Thanks
    34
    Thanked 135 Times in 110 Posts

    Default

    Quote Originally Posted by NurseSusan View Post
    I also have a prominent butterfly rash, and even then the rheumy made me go and have it biopsied to be 100% sure. And I know I meet the criteria to have systemic, but I guess she thinks that my blood work would be worse?

    Thats weird I don't remember the numbers but my blood work was really bad so even that finalized my diagnosis.

  10. #10
    Join Date
    Feb 2012
    Posts
    15
    Thanks
    4
    Thanked 2 Times in 2 Posts

    Default

    I had a slight rash at the time that I first went to my gp and I didn't really have other symptoms except for feeling tired (I thought it was just school). He wouldn't tell me why I needed to do a blood test and I thought it would be an allergy or something but then when the results came he said it was lupus. Took like a week max so I guess I was lucky in that aspect.

Posting Permissions

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