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Thread: Update in my long journey to get diagnosed

  1. #1
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    Default Update in my long journey to get diagnosed

    Hi everyone,

    I had posted in here a while ago and people told me it will be a long and frustrating way to get diagnosed.I thought was worng.
    All started after chickenpox that i had in december and then mono in march.
    Since then i have seen about 8 doctors, infectionists 2, dermatologists 3, neurolog 1 , rheumatolog 2. 5 of them were in Europe where i went for 3 weeks. So it started with some skin goosebumps after chicken pox,then redness and sunburn sensation,then mono,fever, chills and the whole nine yards.In the meantime some mild joint pain shoulders and arms,on and off,
    spine kind of hurts on and off, fine tremor from my cervical,done xray showing some trouble there, neurological problems kind of prolonged brain fog.
    Sensitivity to light ,muscle weakness,muscle mild pain and so on.
    Doctors tell me its all in my head, family do not belive a word i,m saying .
    I,m waiting some new tests anti ENA anti muscle and 2 other i dont remember.
    The conclusion is,those autoimmune disease are hard to diagnose and whomever is in the same position....i think all e have to do is wait.
    Thank you all for the support in the past ans i will keep posting once i know something more.

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    hi terente,

    i am so sorry for all of the trouble that you have faced in the past few months....checkin pox and mono in the last 6 months. You have really been through a lot.

    i hope the tests results that you are waiting on will answer some questions, and maybe drs. can start treating you providing some relief for you.

    keep us posted, and if you ever need friends who don't question what is happening to your body, please call on us.
    Phyllis

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    Ok,back i am. anti DNA negative,ENA negative , Anti smooth muscle negative and 2 other negative.I got nothing as per doctors,but i,m shaking,muscles are moving,dizzy every day,skin sunburn,ocazionally bones hurt mmild.
    All explained on my mono wich started in march!!! Only thing ANA positive back in March and i,ve been told 20% of people carry a positive ANA for no reason.I have been advised to pull thru (thru what?) and wait,no medication.Unbelivable.
    My family doc wont even reffer me to a neurolog or rheumatolog.I am really lost as i feel i have not been completly tested...and symptoms are real.

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    hi terente,

    oh my, i am so sorry that you are going through the diagnosis nightmare. What kind of dr. ran the tests? A rheumatologist or even a neurologist are very knowledgeable in auto immune diseases, and whith your symptoms, thorough testing should be done.

    However, i can believe that mono is still causing you problems...it is amazing how long it takes to get over that one.

    so sorry you har having problems, stay with us, and we will help you get through this.
    Phyllis

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    Torente;
    Wlecome. I am sorry for what you are going through. You have the right to obtain a second opinion, and in your case, it definately sounds like you need one!!
    Yes, ANA may be positive in 20% of the population without any reason, but coupled with your symptoms, it sounds like you should have the diagnosis of SLE!
    Good luch on your hunt for answers. Please keep us posted.

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    Terente,
    I am sorry to hear that everyone is dismissing you. I know first hand how frustrating that can be. I hope you decide to go for a second opinion. You know your body better then anyone else (even those who have degrees on their wall). Does your insurance require a referral? If not, I think you should go with your gut instinct and call that rheumy.
    Best of luck to you with your journey!
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Quote Originally Posted by SandyR View Post
    Terente,
    I am sorry to hear that everyone is dismissing you. I know first hand how frustrating that can be. I hope you decide to go for a second opinion. You know your body better then anyone else (even those who have degrees on their wall). Does your insurance require a referral? If not, I think you should go with your gut instinct and call that rheumy.
    Best of luck to you with your journey!
    Sandy
    My big problem is that i,m in Canada.Here you cannot see any specialist unless you are referred by a family doctor.And she is the one that said she doesnt wanna see me for another 5 months Is anyone in Canada and know different? Can i still see a rheumatologist whitout going thru my family doctor?

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    Terente,

    While I don't know about the health system in Canada, I do know that it CAN take a long, long time to get a diagnosis. It took me 16 YEARS to get one. In the meantime, take care of your body. Follow the "lupus diet" (you can read more here), take supplements, get plenty of rest, and take care of YOU. The answers will come...but in the meantime, do all you can to keep yourself healthy. You're in my prayers!
    Blessings,
    Carrie


    "I feel like I'm diagonally parked in a parallel universe."

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    Hi everybody,

    Thank you again for your kind answers and support.Just an update,havent seen a doctor since my last dermatologist appt.I have bookke an appt with my family doctor tommorow and i will most likely get thru to a rheumy or neurologist.Condition did not improve,strange things happened every day,dizziness inside tremor,cervical hurts,stiff neck, on and off hands on fire.Although my bloodwork came back fine i learned now not to relly too much on them when symptoms are there.I dont know where to go know but i,m pretty sure its either lupus or scleroderma since that ANA came back positive in march and hands burning sensation seems to not go away.Some symptoms match lupus some sclero, i dont have inflamed joints but they do mild hurt..so i will push to see a specialist rather quick.Was just an update in my journey to get diagnosed and i have to say i learned a great deal from you guys!

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    And another small thing.I,m seeing chiroptactor and acupuncturist...everybody tells me not to research on the internet,its all in your head bla bla.Dont we all heard this?

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