Also member PBCers.org; looking forward to "meeting all of you" at this site

[kehello]

73-year old female dx'd Stage 1 in 2001; stage 2 in 2011; scheduled this week to receive elastography, newer-less-invasive scan to determine stage I am either still in or if I have moved on. Many co-autoimmune disorders. Fibromyalgia, osteoarthritis, Sjogren's, interstitial cystitis of bladder, newer heart issues; diabetes type 2. Again, looking forward to talking with all of you. Kathleen in Ohio

[Skypony]

Hi Kathleen, a big welcome!

You're in good company and I hope you get a lot from this very kind and supportive forum. How's the weather in Ohio this time of year?

I sympathise with your multiple autoimmune problems, you must be a very stoical and resourceful person. I've got a few, and it's certainly challenging at times.

Hope your elastography (which I've had too) brings good news this week - please let us know. I wasn't told a stage, just a number, but I think we're less into stages in the UK.

With best wishes.

[kehello in reply to Skypony]

Thanks so much. Brand new thing, this elastography - we all try to look for less-invasive and less potentially dangerous diagnostic tests. Glad you had it and hope your number was to your liking. I'll have to find out what my number means!

[Skypony in reply to kehello]

Thank you, mine was in normal range but I'd had a fibroscan that wasn't. I was told to rely more on the elastography, which I was happy to do!

[kehello in reply to Skypony]

Excellent - makes me feel very good about this test!

Kathleen in Ohio to Skypony

[kehello in reply to Skypony]

Re weather in Ohio this time of year - all of you Ohioans know we have the best weather in the world here in the fall. Actually a little "summer-like" right this week - and last - but the leaves are soon to be falling, and glorious colors (at least I hope this year; we try to take a drive around a little outside our area; news tells us when they are to be their most colorful). For those of you who want to know temps - mid-70's - and a little rain here and there. Kathleen in Ohio, 73 - Stage 2 right now

[Ktltel]

Hello Kathleen,

I've read some of your posts on the yahoo forum. I can't actually join that group to post because for some reason, my cell phone won't allow me to register. I probably need to actually do it on a laptop or PC.

Anyway I found this group last year and I'm glad you have too. Welcome.

You've had PBC for awhile now. It's reassuring to find ones that experience many years between stages. How are you feeling? You have many other AI's as it seems to go. I'm sorry about that. PBC is most definitely enough in itself as you know. I look forward to hearing how you're managing it all. I'm also from U.S. Kansas. So, howdy and again welcome!

Stella ❤

DX PBC 10/16 early stage

DX RA 4/17

DX DeQuervains tendinitis 7/17

[kehello in reply to Ktltel]

Howdy back! Kansas - "where the winds come whipping down the plains!" - DeQuervain's also dx'd 7/17 too - have had carpal tunnel - was transcriptionist for years - but this time thought it was CT and it wasn't - have had massive fraud/id theft against me and it took close to 120 letters to banks/credit unions/Fed. Trade Commission/Cons. Financial Prot. Bureau/3 credit bureaus/ Police/ - got done in 3 mo's what a person working would have had to accomplish maybe in 2 years. It's all off. There is a "story" re who I believe this "lady" was and why it took me so long to find out what was going on. I believe she is traceable, only toooooo sick to pursue.

I will try to condense it IF anyone reallllly wants to hear a sad story/good outcome though - many months of work - I'll make it as short as poss. - and not use any names of places, etc. except ONE, and give you an idea of what can happen to a very sick and older person.

Here is PBC Digest site you can use on your PC or laptop: [e-mail]; or ..... you can send a blank e-mail to that site - just blank - they will immediately respond with an acceptance; in my case, I had belonged several years ago and didn't send a blank one but put the fact I was returning in typing to them, and it was accepted as well.

Feeling "sort-of" good - had some really astonishing thing happen yesterday to me, 73, and my husband 83 in Nov. regarding a "bogus" insurance policy which had been sold to him for a rather large amount/me as beneficiary in 2005. It is no good all of a sudden. This was a very close friend and his wife in their own agency that did this to us. I'm reeling/shocked/worried - so very fatigued from physical/mental/emotional tiredness - after fraud/id theft "gone" now this. Life can be verrrry taxing. He is very re-insurable; been blessed with pretty darn good health for his age and still works! I envy him! We are seeing another ins. agent tomorrow.

Thanks for asking how I am - glad you are a PBCer too - look for you in The Digest, as I know you can log on now. Kathleen in OH

[2006]

What is elastography?

[Ktltel in reply to 2006]

2006,

Elastography is a medical imaging modality that maps the elastic properties and stiffness of soft tissue. The main idea is that whether the tissue is hard or soft will give diagnostic information about the presence or status of disease.

Great for finding liver stiffness/fibrosis I believe.

Stella ❤

[kehello in reply to Ktltel]

Stella - one more good description. IF it does eventually replace the biopsy it would be great. I am doing so well for my known-stage (2) right now I figured if it didn't really go THAT deeply into the stage info., I could wait a few years more to have the biopsy - if - necessary. Kathleen in Ohio ([e-mail])

[kehello in reply to 2006]

"Transient elastography (FibroScan) is a non-invasive method proposed for the assessment of hepatic fibrosis in patients with chronic liver disease by measuring liver stiffness. It can be easily performed at the bedside or in the outpatients clinic with immediate results and good reproducibility." This is off of the Internet - I quoted only one part of it - actually, and much to my liking and others, it is far more than just a fibroscan or liver scan but because it is so new, at least my clinic is providing "free of charge" to gastros/hepas requesting it and their patients' insurances - MORE pictures of the liver, different angles, tells much more than a normal fibroscan.

I have just recently learned this from my clinic's imaging center. I had called Medicare and by golly no one really knew about it much - had to give them a code, they said - then I did and all of a sudden they said they only covered $119 of it - that sort of "scared" me - went back to clinic - and found out about these "free" extra pictures because actually the doctors themselves PLUS the technicians performing the test are learning! In fact I had it scheduled for this upcoming Sat. 10/21 and they moved it up to Thursday before so I could get a tech that is skilled in it.

Everywhere I go onine about this test speaks only in positive tones about its results and how it probably most-definitely will replace the extremely invasive and can-be-dangerous biopsy. I have had two of those (2001 when dx'd PBC stage 1, and 2011 for stage 2). They are painful the next day or so - of course this "scan" is not. I even had an experience with being poked by a new young intern who was assisting my gastro - he didn't think I saw her, but I did - she poked me BEFORE I WENT UNDER! Wow - what a feeling and a response from me! Won't forget that one, and the needle is extremely long and seems to be "thick". Biopsies are very diagnostic, however, as with movement by the doctor go to several areas of the liver and extract samples of the organ to see where you are in your stage(s). Then they send the samples to the lab or wherever, get your results, etc.

it is not an MRI (am extremely claustrophobic!) I have learned.

I don't pretend to be doctor-like - I only have a lot going on, the need to find out if tests are covered by my insurances, and want to make an educated answer in my mind whether or not I actually need one of whatever it is. Don't want to sound medically trained. Am not. Did transcription, however, for 12 lady OB-GYNs in my home for several years - and throughout all of my illnesses have "absorbed" at least s o m e knowledge. Hope this helps at least a bit. Kathleen in Ohio, 73 (Ursodiol only up to this point from 2001 - working very well - 300 mg; two in a.m., one pm - and a lot more of course!) By the way, I learned from gastro they judge the amount of Ursodiol by your weight! I had lost 50 lbs in 2016 - was on four /day; 2 am; 2 pm