Fighting to be Heard

[AllHis]

Someone in Fatty Liver sent me here. I've been fighting for answers, researching, and trying to get a handle on my declining health.

Only 54 and I feel and act 70 something.

Does any of this sound familiar? 18 years ago my gall bladder was removed. Never any stones, but stopped working. (3 years of doctors stating irritable bowel because no stones were found on imaging... )

Next was severe reactive gastropathy. Like a chemical burn. GI doc found copious amounts of bile in both my esophagus and stomach. A termeric suppliment was blamed. I was told something ingested... (3 years ago and counting)

Night sweats, joint pain, vision problems, neck and jaw tightness, even sudden hearing loss...chest pain, palpitations at rest, and CRAZY foot pain. Balance problems with vertigo & dizziness. (I could go on...)

I'm in the middle of a Barrett's Esophugus diagnosis with dysplasia. I need another endoscopy to evaluate the cells with more biopsies...

My lower esophageal sphincter (LES) is not functioning, so I'm on another PPI. (Totally against it as I watch my kidney function fall...>60 now...)

I joined the Sjögren's Foundation and started educating myself. Many people diagnosed "fibromyalgia" and "functional neurological disorder" are really Sjögren's.

It wasn't until I read all the comorbidities, things started making sence. Billiary cirrhosis is one. Lymphoma and multiple melanoma. (Doctors just found "pre cancer" called MGUS and I'll be monitored for MM...)

Anyone with Sjögren's here?

Give me words. Help me ask the right questions so I can get the correct diagnosis.

Health & hugs!

[robertbromley]

You are in our prayers Psalm 46

[AllHis in reply to robertbromley]

Thanks for the prayers. Primary doc ordered AMA M2. Just saw 9.4 on results. (It appears that is "negative." ???)Rhuematologist has ordered a retest of WBC and some other blood work.

My feet were Xrayed and demineralization and arthritis was found. I was told to take 1200 calcium and 4,000-5,000IU D3 for a month. I think a lip biopsy is in the works.

I found a new gastrologist. She doesn't believe Barrett's and will do the monometry test and EGT with biopsies all over again. ( her way, I guess.)

I appreciate the advice here. Health & hugs!

[hotinAZ]

Hello, You need to ask for an ANA (anti nuclear antibody). If it positive, then ask for ANA Cascade which will more definitively diagnose whether it's Sjogrens etc. I was just diagnosed that way along with symptoms. ANA is the best for starting the diagnosis of an autoimmune disease.

[Mommyofmany]

I was diagnosed with Sjogrens using a lip biopsy. They removed and tested several of my salivary glands. I also have a neurological issue the doctor said was Oral Mandibular Dystonia .

[Hidden]

Hi! I was just recently diagnosed with Sjogren’s in the last month.

I would suggest finding a Rheumatalogist( if you haven’t already) who deals with autoimmune disease patients as many simply don’t have that background. My Hepatologist gave me a great referral but they were not on my insurance so I had to call around and find one who has that background. If you cannot, then explain your symptoms and findings to your GI and ask for the Early Sjogren’s Syndrome Profile panel. (Mine was done through Quest Diagnostics. )

While ANA is useful it is not reliable as the be all end all of diagnosis as it can give both false positive and false negative results. I was ANA negative for 3 years meanwhile diagnosed through liver biopsy, Liver Function Tests, and in liver failure with End Stage Liver Disease as a result of cirrhosis from Autoimmune Hep and found later on, small duct PBC.( I am an Overlap Syndrome patient, AIH-PBC ) Only recently did ANA, AMA, IgM show positive after 4 years of negative. The doctor may also order the Sjogren’s Antibodies Test ( SS-A and SS-B also known as Ro and La) but that can also come back negative and you still have Sjogren’s in early stage. Mine was, which is why the Rheumy ordered the early panel to be done at the same time. You may also want to see your Eye doctor as there are tests they do for dryness that also help confirm the Sjogren’s diagnosis if that is one of your symptoms.

I am now taking Plaquenil (Hydroxychloroquine) for treatment so we shall see how that goes ! I still have Fibro as a separate diagnosis from the Sjogren’s- the Rheumy was very insistent when I asked , so in my case they both co- exist together . Good luck with getting answers and I hope you update us with your results. Best Wishes to you.

[AllHis in reply to Hidden]

Hope you're doing well. Thanks guys, for your help. I'm lining up some good help & scheduling more tests. So happy today that my primary agreed to the ANA. Only thing found so far is low D and calcium. Arthritis in my feet and some demineralization...oh and White Blood Count low...

Lip biopsy may be in the works.

Love & hugs!

[AllHis in reply to Hidden]

Are you still on this site?I want to update. I volunteered for a liver study. FibroScan put me at NASH 3 or 4. I just had a liver biopsy for the study.

Yesterday I was in the ER vomiting bile.

*can I get my diagnosis with my liver biopsy?

*anyone have bile reflux?

Oh, I’ve been on Plaquenil now for 6 months. Awesome. No joint pain. Took 2-3 month to work, but the correct medication for me. I still haven’t gotten the Sjogren’s diagnosis, but I convinced the Rheumatologist to try for RA because of my liver. Methotrexate and prednisone were very destructive to my liver.

Live & learn.

I can hardly wait to end this madness of guessing what’s wrong with me…I have to wait 4-8 weeks for my biopsy results. (The study sends it to California and a foreign country.)

[Jjcale]

Going gluten and Dairy free helped my digestive issues.. doesn’t just happen in a day , took me a while to notice changes..

[OdinsMom]

That's a lot going on! Lots of PBCers get Sjogren's . Start with asking for a AMA M2 . I'm sure you've had liver enzymes already tested, are they abnormal? Sadly a lot of your symptoms fit a host of things and aren't just restricted to PBC. If you really feel it's to do with your liver, there's 100s of liver diseases, as for a biopsy.