Everyone please Help me find a Dx. Today I got the results of my lip biopsy. All it said was inflammation. My positive ANA and High sed rate are the only other two labs abnormal that fit autoimmune that they are sure I have one just don't know what one. My symptoms are dry irritated eyes with gritty itchy and burning feelings,my eyes water and hurt in the sunlight, dry flaky eyelids, peeling lips, swollen parotid glands, cracked tongue, the roof of my mouth peels off, bad taste and smells, hoarseness, cotton mouth feeling, cough up stuff from my throat all day long clear with no pathology, I get ulcers under my tongue, constant ringing in my ears, extreme fatigue, restless legs at night, chronic yeast infections, muscle cramps legs/feet/hands and upper back, my toes and fingers extend outward or curl up with these painful spasms, muscle and joint pains, IBS, Gastroparesis that is very painful, GERD, with chronic esophagitis and erosions, chest pain,significant hair loss, beaus lines in fingernails, dry cracked and irritated skin, keloids develop with any injury or surgery,large purple red discoloring pattern in my skin abdomen and upper thighs, brain fog, sensitive to cold, vasculitis, food allergies, med allergies, I have Hypothyroidism, Alimentary Hypoglycemia, HTN, Vitamin B 12 deficiency. If its not Sjogrens what is it? Anyone know? Thanks Tabletop frustrated:(
Hello. When I went to the rheumy for the first time, given my completely normal blood panels, and asked him the same question, "what else could be causing all of my symptoms?" He said, "not really anything else. Despite your bloodwork, I think you still have Sjogren's." Sigh. I am a lucky one in the sense that I found a progressive doctor who will treat me aggressively without any objective proof, going only by the symptomology that I tell him! Despite my eye symptoms, my Schirmer tests are 17 and 18 mm. So, he can't even go by that. He even tells me not to do the salivary gland biopsy. I hope that you advocate for yourself. Do not give up on what you know to be true--your suffering. You will find a doctor to help you. Hugs!
Edit: I agree with the others, for sure, not meaning to imply that you have "X" disease, Sjogren's or anything else, for that matter. My takeaway should only be to not give up because you know that there is something wrong. When I had my first major flare two years ago, my GP told me that there was nothing showing up in my bloodwork, that I was just fine or suffering from anxiety. I did not pursue another opinion, which I should have. Perhaps if I had been more proactive, I would be in better shape than I am today. I just want to be the voice of encouragement in your head to keep you searching for answers!
Thank you so much.
I know it takes a long time to get a dx, sometimes never definitive. The symptoms certainly relate to Sjogrens, but also those of Psoriatic Arthritis and other autoimmune. In either case when I asked my rheumy, he said the treatment would be the same regardless. However, Psoriatic Arthritis usually comes with a positive HLA-B27 inherited gene marker. I don't have the gene, but I have mostly the same symptoms as you. I have learned that finding a good Rheumy that will treat your symptoms has helped. The more I research, the more I see autoimmune as just that...autoimmune--they all seem to overlap. As Ark mom said, advocate for yourself and treat your symptoms. Find a Rheumy that listens and works with you to find solutions that work.
=)
I think you should consider more than one thing at work here, could be an overlap of a few things going on. Sjogrens can accompany many other AI's or be primary, some of the things you describe sound like lupus or sclero, like vasculitis. I would not blame everything on sjs that could lead to misdiagnosis of a poss lurking AI. Not saying you dont have it, but you can have sjs and a multitude of others as well.
I have a hard time understand that the results of your lip biopsy say just one word. Lip biopsies are graded based upon lymphocytes, histiocytes and plasma cells.
Can you post exactly how they worded the inflammation? If that's all it says, I would make a complaint and send it (actual slides) to a reputable hospital (like Johns Hopkins) for it be properly read.
Thank you everyone. I have been looking for answers to my problems for 35 years, I am 58 and it wasn't until reading on the internet about Sjogrens that all my symptoms fit into AI. I just wish I knew what ones. I think Lupus and Sjogrens but like I say do not have a Dx from anyone. I do not have a copy of my lip biopsy report they just told me all it said was inflammation but I am going to request records of all my labs and the biopsy to keep for myself. Thanks everyone. Any other ideas on my symptoms let me know. I appreciate your help and support. It is nice to know you are not alone. I do feel like my body is a walking inflammatory machine! Tabletop
Guess what? Tivia you were right. I saw the Rheumatologist today and she gave me the diagnosis of Atypical Lupus and Sjogrens. She did more blood work and a UA and put me on Plaquenil and Elavil I know its an antidepressant but she said she is using it for sleep. So 35 years of trying to find out what all my weird symptoms were all about I finally know. They need to develop a better way! I hope as a new comer I can find out lots of information and provide it to you guys and help others. I want the best treatment I can get to stay healthy as you all do. I made an effort to study Sjogrens I guess I need to look at Lupus now and learn more. Thanks for your help Tabletop (real name) Terriesha pronounced Tree-sha
I am glad you are a step closer to feeling better!
When I started my diagnostic journey I was oh so sick, and now I have modestly improved. Things are looking brighter for you, too!
Ark Mom Thank You, that sounds encouraging because yes I have been in this current flare for almost a year. My voice is terrible I have a chronic yeast infection my skin is so dry, my eyes hurt so bad and my hair is falling out in gobs. I could make a comedy because it seems nobody should have all these weird things going on all at the same time, I think of myself as a mess. It is not funny it is awful but laughter helps me feel better about it. I work full time and go home and crash I have been good at cover up for the way I really feel to keep my job and it sounds like my treatment will have a chance to help me feel better. Thank you again. Soon to be better. Tabletop
Terriesha (what a lovely name)
This is the first time I've seen you post, so just let me say, welcome to the family.
You must be feeling on a high, to have finally been given a name for all your symptoms. It's good to be validated, isn't it. I hope that your drugs kick in soon, and that you feel a lot better in a few months time.
All the best.
Hugs
Kathyx
Welcome! I'm sorry about your diagnosis but it is a relief to get one. I hope your new meds help you. Plaquenil helps me so much.
Take care ! engy
Glad you finally have a diagnosis!! If it looks like a duck, walks like a duck and quacks like a duck .. then....
As far as the yeast, make sure you are taking a high quality probiotic and plenty of it!! I used Custom Probiotics because it's dairy free. Theralac is also good .. or Ultimate Flora. Custom is cheaper than the others.
Stay on a healthy diet and perhaps include homemade kombucha. That's my newest and greatest love! ;)
HUGS!!
tabletop
I'm pretty new to this board and my dx as well. I was pretty sure originally it was at least fibro, which turned out to be my 1st dx after blood work and a visit to rheumy, next visit with additional blood work done 2 weeks prior (so it would be available at 2nd visit) dx with ss. For me things have happened really fast compared to a lot and for that I'm grateful. I'm also very grateful to this board, I've learned so much on here, its like my new best friend. I am really glad you found us, there's a link on here about flashcards I read this morning that's really good. Theres also a lot of information on products that help more than others, hopefully you'll save a dime or two.
XOXO
Ldy
Everyone and Ldy (Wow) me too. I feel like you are all my new best friends. I have learned more on this forum than any other place about how to care for my self. You are all amazing and I am so thankful for you sharing and for all your support of each other and to me. Love for others is in the true spirit of Christmas and I hope and pray all of you have a Wonderful Holiday feeling the best you can. Tabletop AKA Terriesha
Can you imagine if our rheumys took the time to tell us all that we've learned on here, we'd be their only patient. Mine loves to say read, read and read some more no two are the same, while that's true I think its his way of saying he doesn't have time to teach me all this.
I check the board often when I can, I emailed my hubby the spoon theory since I knew it would take him forever to do on his own. Once again something super valuable I learned here. I'm thinking of hanging it as art work somehow for everyone to read! HaHaHa!! I'm so glad we are all here for each other, its made a huge difference in my world.
XOXO
Ldy