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  • #3745
    Emer73emer73
    Participant

    Hi everyone,

    I was diagnosed with raynaud’s 2 years ago. The reumatologist thought it was primary, since negative ana and other antibodies, but i sometimes wonder. First of all, teh way it started is pretty a-typical: firsta few toes in my left foot, then in my right foot, then sometimes at the same time, but maybe 1 toe in one foot and 4 toes in the other foot, or half the foot and around the heels. So never symmetrical. And recently it is starting in my hands, first 3 fingers in my right hand and now I feel little sparks in my left.

    Apart from that i have other symptoms, joint pains, carpal tunnel syndrom, tendinits, nerve pains, fatigue, dry eyes etc

    Wondering, does this sound more like secondary?

    #3754
    KarenKaren
    Moderator

    Welcome to the forum, emer73.

    It can take anywhere from 10-15 years, if at all, for an underlying disorder to show symptoms along with the Raynaud’s. So, it’s possible that you might have something else going on that the Raynaud’s symptoms are accompanying. And, tests can return negative but that shouldn’t rule out the possibility. Also, you may actually have primary Raynaud’s and your other symptoms aren’t related to a connective tissue disorder that would be associated but, possibly to some other ailment This will be a process that you and your rheumatologist, or primary care doctor if you prefer, will have to keep tabs on and go from there.

    I hope you have a look around our site and are able to find some more information that could be helpful to you.

    #3759
    Emer73emer73
    Participant

    Thank you Karen, you have been very helpful.

    Just a matter of wait and see then. The thing is, I think I read somewhere that secondary Raynaud’s is usually a-typical and a-symmetrical and that the age of onset is higher.

    I got sick 2 years ago and got all these weird symptoms and then developed Raynaud’s.

    Currently I am not seeing a doctor for this. The rheumatologist I saw was in Holland and I recentley moved to ireland. My primary care doctor doesn’t even know I have it, doesn’t know about the other symptoms I have either.

    #3760
    KarenKaren
    Moderator

    It might be best to inform your doctor of your symptoms and see if it warrants any treatment, monitoring or referrals.

    #3763
    Emer73emer73
    Participant

    You are right, I should especially since I am getting more and more joint pains and other tendinitis like symptoms. But I don’t get on with my GP.  I am trying to get en new one and then I will go through the process again. The waiting lists in Ireland for certain specialists are crazy though (unless you go private). I am on the waiting list for my carpal tunnelsyndroom: at least 2 years!! 🙁

    #3764
    KarenKaren
    Moderator

    I can relate to bouncing from one doctor to another and starting over again. This time around, I have been fortunate and I wish the same for you.

    #3787
    Emer73emer73
    Participant

    Thanks karen! I might have to make another bounce because if things go according to plan we will be moving to Canada in a few months! hopefully I will get a nice doctor there! 😉

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