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Recently diagnosed with vasculitis

Posted , 8 users are following.

Sonkinha
Sonkinha

Hello. I'm a 25 year old male and I've been recently diagnosed with vasculites.

The blood tests showed absolutely nothing so the doctors don't know the cause.

Does that mean it auto immune?

Is it something very difficult to live with?

Regards

0 likes, 22 replies

22 Replies

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  • philtw
    philtw Sonkinha

    Posted

    Hi

    What makes theDrs think you have vasculitis? 

    And yes it’s an autoimmune condition 

    • Sonkinha
      Sonkinha philtw

      Posted

      The look of my legs I guess. Can say it for sure since I went to 3 different doctors and they all reach the same diagnose.

      Not all vasculitis are auto immune right? Since there are several of them?

  • philtw
    philtw Sonkinha

    Posted

    I thought it was

    {Quote} Vasculitis (vas-kyu-LI-tis) is a condition that involves inflammation in the blood vessels. The condition occurs if your immune system attacks your blood vessels by mistake. This may happen as the result of an infection, a medicine, or another disease or condition.

    They should have done the following blood tests - ANA, ANCA, ERS, CPA

    • Sonkinha
      Sonkinha philtw

      Posted

      The blood tests where very basic but the doctor already told me to do very complete blood tests (that I already did) that I believe includes all you said and more. The list is enormous.

      Also lung and heart tests.

      Anyway my legs marks are almost gone.

      My symptoms where only the typical skin marks (95% below my knees) and tired legs.

      No fever, no urine blood...

  • Sonkinha
    Sonkinha

    Posted

    Problem with the new tests is that they only gonna be ready in the end of next month...
  • philtw
    philtw Sonkinha

    Posted

    Yes my blood tests cover a lot more than I mentioned as they have to check your kidney and liver enzymes. They also check your chlorestrol, thyroid, inflammation, blood condition with vitamins  (full blood count) and blood sugars. 

    I suffered from upper respiratory conditions, along with painful joints fingers and toes first and then migrated to my knees. I was also losing weight as I didn’t not feel like eating, night sweats and malaise. I had painful lesions on my elbows which kept bleeding

    I eventually couldn’t walk and was immediately referred to hospital 

    I also have two coin lesions on my lungs 

    I hope you don’t have vasculitis and it’s something simple. 

    • Sonkinha
      Sonkinha philtw

      Posted

      I was diagnosed with vasculitis by 3 different doctor. So I'm sure I have it.

      Just can have a different type than yours.

      Vasculitis is a general name. By a quick search on the internet I can see many types of it.

      Just hope it not a serious one.

      How long did it take for you to get diagnosed till your worst condition?

  • philtw
    philtw Sonkinha

    Posted

    Since I had PAN when I was 21 it took 12 months and like I said I couldn’t walk. 

    When I was 51 I have GPA and that took 6 months as I knew what was happening and I had to convince the doctors in Qatar where I was working 

    • Sonkinha
      Sonkinha philtw

      Posted

      I'm those months at any time did you tough you where getting better? Because by now I'm almost "cured"

      I mean on the outside. physically.

  • philtw
    philtw Sonkinha

    Posted

    To be honest I have been up and down on steroids for the past 5 years and I think I will be on for quite sometime. 

    It doesn’t worry me and physically I’m ok. I don’t lose any time off work either and I enjoy outdoor sports. 

    • Sonkinha
      Sonkinha philtw

      Posted

      I'm glad to hear you are OK even tho you have a more severe condition than I. At least for now

  • nancyr06
    nancyr06 Sonkinha

    Posted

    Hi Sonkinha yes vasculitis is a auto immune decease. I was tested for vasculitis because my sister has lupus and vasculitis she had to have amputations on her feet because it started attacking her feet. Do you have any symptoms? 
    • Sonkinha
      Sonkinha nancyr06

      Posted

      the only thing I have is red and purple spots on my legs and feet. It's probably only the first stage.

    • nancyr06
      nancyr06 Sonkinha

      Posted

      Yes that’s how my sister startedsad then they started turning black and started spreading to all over her feet. Drs here where I live didn’t know what was wrong and because of the shortage of rheumatologist here no one could see her. So by the time she saw one and also a foot specialist her feet were gangrene and had to get amputations. I don’t want to scare you I’m just trying to help people not go thru the same thing as my sister, she suffered so much sad( I saw the best rheumatologist here and took my sister with me and she explained to my sister and I about a medication called  Retuxin and that her gangrene  could’ve been reversed with it. 
    • nancyr06
      nancyr06

      Posted

      And could’ve prevented it 
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