Finally got diagnosis

Well, I finally got diagnosis after going back and forth from doctors. I was in hospital for a week in January and they said my synthroid dosage for my thyroid was too low. Doctor increased it and I started feeling better overall but still achy and tired and not quiet feeling good. I saw a rheumatologist in March that basically said I was old, fat, and lazy and the numbers were not high enough so it wasn't lupus. I went to see another rheumatologist about two months ago and been having tons of lab work tests, ultra sounds, and xrays. I went for follow up last Wednesday and she told me I have lupus, sjogrens, ra, uveitis(I have been having for a year and seeing eye specialist for), and that I tested positive for hepatitis so I need to see liver specialist. Wow!, I am freaking out and trying to absorb it all in. My husband said at least I finally know what it is and can start getting treated for it but now I have all these pills and eye drops to take and I feel like a ticking time bomb that is falling apart! I don't want to let it get me down because I have to avoid stress but having a hard time dealing with this. My face and left arm are numb so may have to go see a neurologist. I always feel better with ya'll to help but I am having a hard time with this right now so why it has taken me a week to post this. Feeling very low...

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  • Sorry to hear your going through all of this but im very happy that you finally have a diagnosis. Hope you start to feel a lot better soon.

  • It will get easier. I have all the things you've been diagnosed with and have lived with them most of my adult life.

    Although it's hard, life is still good at times. I'm actually on my last year doing a degree at the moment. I've now been living with auto immune stuff for over 25 years.

    Once you get on the right medication and learn to adjust things will get better. I have to rest a lot and often have a sleep in the afternoon. Eat healthy and try and exercise a little even if it's just a short walk.

    It took me years to get a diagnosis and that was the worst part for me. I felt like I was going crazy as no one believed I was ill. I was only 23.

    Is it auto immune hepatitis?

    Wishing you all the best on this journey X

  • I see liver specialist September 8th but rheumatologist just said my lab work showed positive on hepatitis and liver doctor may want to do biopsy.

  • A biopsy will show what type of hepatitis you have. I suspect it's auto immune with all the other things going on. If it is, the same drugs are used as in lupus etc. I've had 3 biopsies over the years and they are not too bad. You have to spend most of the day at the hospital resting afterwards.

    I'm sure you will feel so much better when you get on the right treatment for these things and they get under control.

    Hoping you feel better soon. All the best X

  • I saw liver specialist and he said it was autoimmune hepatitis. I had the biopsy done Thursday so now I wait for follow up appointment.

  • Hi, thanks for posting the outcome. They should be able to tell you what stage your at with the liver biopsy. My last biopsy showed stage 3 fibrosis, that was about a year ago, it has taken 15 years to get to this stage as the first biopsy showed only inflammation,

    If they manage to keep it under control it will progress very slowly or stay In remission. I have had a few flare ups along the way. it might be worth asking if you can try Budesonide instead of prednisolone as they are a fairly new steroid with less side effects. I switched over about 3 months ago, and I much prefer them.

    I find I feel better when I have small meals and plenty of fruit and vegetables. Also drinking a lot of water seems to help.

    I wish you all the best and hope the results are damage.

    All the best

  • oh, dear, I hope it is not fibrosis. That makes me nervous. I don't really know what that is so I will read up on it.

  • YOU HELPED Me I retired from an Urban school system after 32 years....didn't plan on it, but had too. Rest....changing my eating habits and HAVE TO LOOSE WEIGHT. Thank you for your words of encouragement.

  • I have been a substitute teacher last six years and really enjoyed it> This past school year, I was only able to work three days and two of the days I had to leave early. School started last week again and I am not able to work yet. I am able to get out of bed and do a little at a time now and hold my grand babies some so that helps. I love to sew and hope my eyes get better soon so I can make baby clothes ;)

  • Hello ac....I hope you can πŸ˜‚ if I say: CONGRATULATIONS πŸ†...we all know how much "official recognition" can hoping you'll keep us posted as you launch into the treatments that come with your diagnoses....this is a BIG πŸ’‘ moment for all of you: family, friends, medics...I hope this is the beginning of a better life for you & yours. Thanks so much for your so glad you're here

    πŸ€πŸ€πŸ€πŸ€ coco

  • She tried me on methroxinate but it made me very sick and didn't help when she cut dose in half, I still couldn't tolerate it. I am now on prednisone, Imuran, and hydroxychlor. The eye drops are prenisone and alphagan. Then I am taking flonase and claritin for allergies because I got a bad cough while on the methroxinate.

  • πŸ‘πŸ‘πŸ‘πŸ‘πŸ€πŸ€πŸ€πŸ€

  • Friend...just like your husband said...You Know. I know you want to say a few things to that doctor who did not diagnose this earlier...but know you know. The recovery begins NOW. Some of your ailments are because the other wasn't being treated. They kept telling me it was menopause. Took the blood test and it said, NOPE. Then I would I'm just crazy....I knew how I felt. MARCH 2015...the test said POSITIVE for Lupus, not diagnosed. WHAT! But my RA doctor started treating me for Lupus...... The journey YOUR research. Ask LOTS of questions. ..and when one medicine doesn't work...tell the doctor immediately. Now just RECOVER from whatever they say you have...God is in control. YOU Don't have those ailments. are in recovery.

  • Thank you. My blood work first showed positive for lupus in November 2014 but family doctor brushed it off saying menopause also. When eye doctor found the uveitis September 2015, she suspected lupus so a year later and I know for sure. I am 54 years old now and thank God I was able to raise my son and daughter before I got all of this because I see so many younger people on here and can not imagine having to go through this and having energy to do even a fraction of what we did. Sports and outside activities would have probably been impossible and my children would not have been able to have such an active childhood I am sure. I have twin grand baby boys who turn 7 months old tomorrow and I have something to keep me going even though I can not always help much. I am so excited and happy to have them staying here with us because I get to see them everyday.

  • Well I'm joining in with the congratulations on getting clarity at last and really hope you can put all the fat lazy doctoring of the past behind you now. I'm in a very similar position having just been rediagnosed with primary Sjogren's that may now be affecting my lymphatic system (lymphoma) and my central nervous system. I was diagnosed with RA five years ago and have had to fight for five years to get a diagnosis of a connective tissue disease added to the list. Like you I'm already hypothyroid too abs have just had my thyroxine dosages changed.

    Having lived with asiago she's of RA for five years I know that Uveitis is very closely linked with RA often - although I don't have it myself thankfully. Best of luck getting your head round all this. Personally I'm terribly relieved to have a proper diagnosis and I'm hoping that once I am allowed back on treatment the excess weight, gained last year from six months on steroids, might drop off at last.

    I do have some anger that I haven't managed to properly get shot of, around the whole not being believed or taken seriously for a few years thing. But I don't think it's particularly healthy or constructive to dwell so I've written a few polite but to the point letters to relevant parties in the hope that they think twice about dismissing patients with similar symptoms in future. I wish you the best of luck with ongoing treatments and care. Twitchy x

  • I actually lost almost ten pounds which surprised me but maybe it was because I could hardly eat for the two weeks I was on methroxenate. i am hoping I don't gain any while she is weaning me off the prednisone.

  • Hi ac

    So sorry to read of all your health problems, it must be a big shock to suddenly be diagnosed with so much!. Give yourself time and it will feel easier and you'll feel relief that you've been diagnosed. An end to the what ifs and is it?. Did your Rheumy propose treatment?. You will start to feel better when it kicks in but it can take a while to get the right balance. It must feel overwhelming also your having to see other specialists, we collect them sadly with these illnesses so give yourself a lot of TLC and given time you will feel better. Keep sharing on here as we'd all like to know how you get on. X

  • I am on Imuran and Hydroxychlorine now. Slowly weaning off the prednisone. I feel a little better since it is starting to help with the joint pain. I am still having days where I gave no energy to move and when I do have a little energy, I get exhausted quickly so can't get much done.

  • Hi ac

    Glad your on good treatment , seeing some improvement and reducing the steroids. Are you doing the reduction slowly as it can affect energy levels if not?. Will you be going back to Rheumy soon to report progress?. Keep us posted and take care. X

  • She is reducing it slowly. I started on four pills a day then dropped to three for two weeks, then two for two weeks, then I will go to one tomorrow, and then none after two weeks. I have follow up appointment next week. Neurologist is checking blood for b12 because she said that can also cause more fatigue too.

  • Hi ac

    It is a great achievement to be coming off the steroids. I'm glad your doing it slowly, sometimes the last bit can be the hardest so fingers crossed you make it, all the while though Imuran and Hydroxy will be kicking in so I'm sure you will. Your neurologist sounds good as she's testing your b12. Low b vitamins can cause nerve problems as well. Good luck for your Rheumy appt. keep us postedX.

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