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  • New symptoms, Drs not helping!

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    Old 08-08-2017, 09:34 AM   #1
    LED
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    New symptoms, Drs not helping!

    I was diagnosed with Secondary sjogrens syndrome when I was 17. As a young child I had problems with my kidneys and had a big Kidney Reflux Op when I was 5, I was constantly getting sick and was on a near constant supply of anti biotics for most of my infant life.

    From 17 onwards I suffered the usual symptoms that come with sjogrens, rheumatoid arthritis - so bad some days that my husband had to dress me and help me on and off the toilet, completely dry eyes (no tear fluid whatsoever) and dry mouth (have lost 7 teeth and have over 30 fillings...). In my early 20s this was not fun to deal with and I have had little to no help or management from my Dr. On top of this my immune system is so weak that whenever I get sick or get an infection (which is very often) I tend to pick up one or two more virus's on top of it. For example I have had sinisitis, gastroentiritis and vertigo all at once, I have also had laringitis, labyrinthitis and a urine infection all at once. It's like my body literally can't fight anything off.

    I had my first child at 27 and remarkably my arthritis completely calmed down since having her. My eyes are still completely dry but my dentist manages my teeth regularly now and touch wood I have not had a filling in over 4 years.

    Then the new symptoms began, and I am at a complete loss as to what is wrong or how to cope with it.
    For the past year I have had the following symptoms, every day, they seem to worsen towards the afternoon- evening and are completely ruining my day to day life, and most probably my husbands too as I am so miserable right now.
    The symptoms are:
    Strong Nausea - like your'e about to throw up but never do
    Acid reflux - rising sick feeling in throat and lump in my throat
    Stomach and back cramps
    Feverishness - with no actual fever
    Shakes
    Shortness of breath - like I feel like I can't take a full breath of air
    Heart Palpitations
    Fatigue
    headaches - intense and right behind the eyes
    difficulty swallowing

    I have been back to my Dr over 15 times over the past year and they have basically turned around and said they don't know what to do with me...helpful!

    I have had several blood tests, all of which have come back completely normal apart from my immune markers being high (no surprise there)
    They have referred me twice to immunology and twice they have refused my referral.
    I have been through several possible diagnosis with them including
    Coeliac - NO
    Diabetes - NO
    Hepatitis - NO

    My Dr now thinks that I may have contracted a secondary Auto-immune disease, he mentioned Lupus but said that he doesnt think the symptoms match up...

    Really at my witts end. It has been a year now of feeling so sick every day that I can't eat properly, do things with my daughter or friends and family because I feel unwell and have to go to bed..
    A year of not drinking (I love wine) because I feel too nauseous
    Not eating out because everything turns my stomach
    A year of not leaving the house much because I feel to unwell and just want to lay down
    A year of missing out on Life in general
    A year of not being the best mother I can be because 'mummys too tired to run around the garden today baby, or mummys not feeling well'
    A year of not being the best wife because 'Can I leave the dishes till the morning, my head hurts' and ' do we have to go out to eat? can we just stay home?'

    It has gotten the point where I feel completely alone in this and even my Dr has no idea how to help me or is even trying to.
    I cry all the time because I am so fed up of waking up every day and feeling like crap. I appreciate that I will never wake up and feel completely healthy and full of beans but I can't bear another day of feeling so sick and tired and just willing the day to be over so I can sleep.

     
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    Old 08-08-2017, 10:43 AM   #2
    quincy
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    Re: New symptoms, Drs not helping!

    Sad to hear the hell you're going through. My sister has it and my MIL had it diagnosed late in her life.

    Are you seeing a rheumatologist, and are you on any medications?

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    Old 08-09-2017, 06:55 AM   #3
    LED
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    Re: New symptoms, Drs not helping!

    I was under a rhuematologist for a few years after diagnosis but they never put me on any full time medication, only perscriptions for naproxen. They discharged me after I had my daughter as my joints improved so much.

    I don't recieve any medication or even preventative medications for my eyes, mouth or joints anymore. The GP seems fairly unconcerned and unhelpful so I just manage it on my own and then they pump me full of high doseage antibiotics when I get yet another infection. If they put me on anything lower than 500mgs it just doesnt seem to shift it.

    I have just booked to see a private consultant (260.00 for a half hour consultation )

    Will see how that goes. I have also just done a home food allergen kit and sent it off to see if changing my diet will help at all.

    Just so frustrating when even the people who are supposed to know how to fix you don't seem to have a clue what to do with you!
    Thanks for your kind words

     
    Old 08-09-2017, 08:29 AM   #4
    quincy
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    Re: New symptoms, Drs not helping!

    Is a private consultant a naturopath? Or a specialist MD?

    I think you should seek out a rheumie who specialises in lupus/sjogrens. Both are serious diseases with serious physical issues. The fact that your doctor isn't concerned is frankly alarming!

    My sister is only on Imuran plus gabapentin for the latest which is neuropathy and numbness/neuopathic pain.....she does have other autoimmune diseases as well, since they live to party together.

    When do you see the consultant?

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    Last edited by quincy; 08-09-2017 at 08:31 AM.

     
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