Got rheumatologist appt tomorrow long list to speak to him about been a rough...

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  • Hope all goes well for you today Joanie and you get answers,that's that hard thing about "invisible" illnesses you look fine from

    The outside and when u try describe how u feel it's hard work! And frustrating when u know by your

    Symptoms it could

    Be serious and getting told no its prob dry skin or something other than the thought u have in your head,I went on that PBC website yesterday and ticked most of the symptoms so I am

    Going to demand this blood test so I know for my own piece of mind one

    Way or the other x

  • Good Girl, Hayley!! You may have read that pbc and ss often go together. I'm not sure if the AMA results can get back sooner now than 5 1/2 yrs ago, when it took a while. Be sure to ask if he's sending your blood out to a specialty lab, so you'll have an idea how long you'll have to wait. Thanks for the encouraging words. I'll keep you in my prayers. : ) xoxo

  • Doc went really well he listened to my concerns and also checked up online how they would detect this PBC he said he only has 2 patients with the condition it's so rare, he ordered another LFT also AMA said it could take between 2 weeks to a month for results to come back,just a waiting game now,he also said I have IBS as my coeliacs screen came back neg,so least I know what's wrong there as everything else has been ruled out. Hope there is no AMA when the bloods come back but least I will know 1 way or the other,thanks for the advice xxx

  • I was so ill today, that I had to reschedule my Gastro appt. for tomorrow morning. Also am finally getting an mri to determine what's going on with this mass I have above my right knee. Finally, a new RNP (nurse practioner) physically examined it. It's about the size of my hand when I cup my palm over it. It's numb but the femoral neuralgia is extremely painful. It was such a relief to have someone take it seriously!! I'm so excited to start finding out what the darn thing is. (Hopefully I haven't just reposted this. Brain fog is in high gear!!) xoxoxoxo Hayley, I can't wait to hear back from you when you have your results. So glad your GP took you seriously!! And I join you in hoping it comes back AMA negative!!!

  • sorry u have had a rough day Joanie, good luck with Gastro tomorrow, thats brill news about the MRI bbit worrying though having sucg a large mass, let me know when u find out what it is, im intregued now.... will let u know soon as i do on the results... 2-4 weeks i have been told, fingers crossed sooner rather than later :-) xx

  • Good news No AMA found in bloods :-) x so guessing game as to why I itch now x

  • congratulations Hayley!!!! I'm so happy for you!!! My abdo ultrasound showed changes to my liver for the first tim. It's enlarged and has ''coarsening of the liver architecture''. Geez, who writes this stuff? anyway, they seem to be taking me more seriously now. gonna send me to a University Hospital for a liver biopsy's about time. also talked about putting me on Methotrexate. that scares me though. anyone familiar with taking it??? my ammonia levels have been high consistently which passes the blood drain barrier and can cause encephalopathy, coma, and death. lol new med for that - makes you poop a lot which is a drag....iykwim. but anything to get clear headed again!!! xoxoxo

  • make that blood BRAIN

  • Wow Joanie that sounds like scary stuff! Glad they have found these changes though least now they can sort u out! My friends mum takes methotrexate for her rheumatoid arthritis , she don't seem to have any problems taking it, anything has to be worth a go if it will help you out in any way xxx

  • Amen, Hayley!! xoxoxo