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Thread: What about iniyial symptoms of the extremities anyone?

  1. #11
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    Quote Originally Posted by MikeG-2012 View Post
    Before diagnosis, I had been to the ER twice with joint pain and numbness. Now that I've been diagnosed, I've learned that traveling rheumatoid-like issues are a common occurrence with Wegeners. One day, it was my knee, one day my ankle, another day, both hands, another day, my jaw and face, another day the other knee, etc., etc.,etc.
    Same here. Migratory pains. I was a teenager and they just didn't take it seriously when I said that the pain would flit from shoulder to elbow to each joint on the finger to my hip to knee etc. at first it was like a line was drawn down the centre of my body and it only affected the right hand side of me. Later, all over and I never knew which joint it would be when I woke up in the mornings. That went on for months. Also had raynauds and hands would go white if they got too cold too quickly.

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    Quote Originally Posted by kmac14 View Post
    Same here. Migratory pains. I was a teenager and they just didn't take it seriously when I said that the pain would flit from shoulder to elbow to each joint on the finger to my hip to knee etc. at first it was like a line was drawn down the centre of my body and it only affected the right hand side of me. Later, all over and I never knew which joint it would be when I woke up in the mornings. That went on for months. Also had raynauds and hands would go white if they got too cold too quickly.
    I had the joint pains, too, before diagnosis, but they didn't migrate or present separately on opposite sides of the body so much, as they seem to with others. Everyone is a little different. I found that if I was on 5mg. of prednisone or more, I had no joint pain. I'm above that dose now, so I have none currently, but will have to anticipate that that if I ever get below 5mg.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I had the joint pains, too, before diagnosis, but they didn't migrate or present separately on opposite sides of the body so much, as they seem to with others. Everyone is a little different. I found that if I was on 5mg. of prednisone or more, I had no joint pain. I'm above that dose now, so I have none currently, but will have to anticipate that that if I ever get below 5mg.
    I remember visiting many doctors with migratory abdominal pain. Needless to say I was looked at as if I was mad and negative test results colonoscopies, scans blood test all returning normal results confirmed their suspicions. When the disease spread 17 years later, one of the many symptoms was migratory pain in my arms and legs. Usually when it occurred on one side I would get the exact same pain on my other limb, same area only for it to disappear and occur somewhere else. They didn't have to take my word for it this time.... they could see the swelling and inflammation with their own eyes. But as my condition deteriorated my symptoms in my extremities became much worse. I got acute tendonitis in my Achilles Tendons, first one side then the other a day or so later. I was crippled from this and it wasn't going away. I was going downhill fast at this point and was soon hospitalized with that and all my other symptoms. WG was soon diagnosed with major organ involvement.

    A year or so later, now in remission and well enough to research this terrible disease that has almost killed me, I discover that migratory pain is a common symptom in vasculitis.

    Rose
    Last edited by Rose; 11-04-2014 at 08:26 PM.

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    I didn't read every post, but my toes turned black and my hands still go numb and painful. They told me that the hand thing is neuropathy and luckily as soon as I received treatment my toes fixed themselves up. I still have tingly hands though, one quite a bit worse than the other.

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    Quote Originally Posted by Rose View Post
    I remember visiting many doctors with migratory abdominal pain. Needless to say I was looked at as if I was mad and negative test results colonoscopies, scans blood test all returning normal results confirmed their suspicions. When the disease spread 17 years later, one of the many symptoms was migratory pain in my arms and legs. Usually when it occurred on one side I would get the exact same pain on my other limb, same area only for it to disappear and occur somewhere else. They didn't have to take my word for it this time.... they could see the swelling and inflammation with their own eyes. But as my condition deteriorated my symptoms in my extremities became much worse. I got acute tendonitis in my Achilles Tendons, first one side then the other a day or so later. I was crippled from this and it wasn't going away. I was going downhill fast at this point and was soon hospitalized with that and all my other symptoms. WG was soon diagnosed with major organ involvement.

    A year or so later, now in remission and well enough to research this terrible disease that has almost killed me, I discover that migratory pain is a common symptom in vasculitis.

    Rose
    Hi Rose,
    Were you ever tested for MRSA?

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    Quote Originally Posted by mrtmeo View Post
    Hi Rose,
    Were you ever tested for MRSA?
    No. Wondering why I would be. Is there a connection?

    Rose

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    Quote Originally Posted by Rose View Post
    No. Wondering why I would be. Is there a connection?

    Rose
    Yes, there has been some links
    http://www.wegeners-granulomatosis.c...sible-aav.html

    My mom had mrsa colonized.
    I used Lugol's 5% solution to distilled water 1:100 in a neti pot and she became mrsa negative.
    Also, her wbc came down from an average of 12,000 to 6,400.
    Her achiles tendon started to rupture and colloidal silver stopped it, but I didn't know that was the problem until months later.

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    My WG was definitely triggered by a severe case of gastroenteritis. My son picked it up at Nursery school and both my husband and I caught the bug, I had been a very healthy person before then so why did this trigger WG in me whe both of them recovered? I dont know which bug caused the gastroenteritis but there is no doubt in my mind that that infection triggered my illness. At that particular time in my life I was under severe unrelenting stress for abut a year. I think that if i had not been so stressed I would have recovered as my son and husband did.

    Rose

    Probably a genetic predisposition there also as I have a sister with RA

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    GREAT blog: Keep fighting.

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    Quote Originally Posted by Rose View Post
    My WG was definitely triggered by a severe case of gastroenteritis. My son picked it up at Nursery school and both my husband and I caught the bug, I had been a very healthy person before then so why did this trigger WG in me whe both of them recovered? I dont know which bug caused the gastroenteritis but there is no doubt in my mind that that infection triggered my illness. At that particular time in my life I was under severe unrelenting stress for abut a year. I think that if i had not been so stressed I would have recovered as my son and husband did.

    Rose

    Probably a genetic predisposition there also as I have a sister with RA
    I think the disease is hiding in our cells and only comes out with severe immune suppression, especially when under stress.
    Some people get symptoms shortly after vaccines, like my mom.

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