All signs point to sjogrens. My Mom was diagnosed with primary sjogrens 22 years ago at NIH in MD with a lip biopsy score of 7. Despite rheumatologist reports saying she was fine and did not have the disease.
My first blood work testing was done 5 years ago…and showed nothing, I was told I was “fine” and to take vitamins and exercise.
I have gradually developed all of the symptoms over the last 10 years, joint pain,losing teeth,dry eyes,dry mouth with candida albicans, hives,and coughing everytime I try to eat and swallow food. My only nutrition is from a product called Neocate Splash that I drink 4-5 juice boxes a day. I have tried to eat many different types of food, but textures and spices burn my throat. Soft meatloaf mashed potatoes,jello,and a few other…but anything other than my drink is always followed by heartburn.
I’ve had this swallowing issue 4 times before lasting 6-8 months and just magicly going away… But this time it’s been over a year and I’m skinny.
Two months ago I lost control of my hands. I didn’t notice at first…I can’t open containers, help my son tie his shoes and zip his coat, I feel like I can’t get a comfortable grip on a pen,and occasionally one of my fingers will lock in a bent position. I’m so upset I want to cry,but I can’t… Maybe a few drops out of my left eye…my tear ducts very narrow and almost closed.
So folks…what should I do? I wait for the study at NIH and let them perform “Every” test on me to confirm my diagnosis.? It’s possible this study may even determine if my 22 year old daughter has this disease. Or go to my local ENT for the lip biopsy on my own? Or just continue to suck it up?
I am blessed with 4 beautiful,health, smart children and a loving supportive husband.
It took me a while to be diagnosed with SS. I had started to believe the doctors telling me it was all in my head. Your eye doctor can help with your dry eyes with either plugs or retasis. Mouth dryness you can use Biotene. They also make a lozenges. Vagina dryness my OBGYN put me on Premarin and Vegifem.
Because you are having such severe problems with eating as well as joint pain and possible damage, you need treatment. My thought is that the lip biopsy may or may not get you closer to treatment. When people are as severe as you, they often benefit from systemic treatment. Who would be treating you following diagnosis?
Also, you asked about your daughter. . . There is a tendency towards autoimmune disease, but that doesn’t mean that your children will develop Sjögren’s in particular or any autoimmune disease. Does she have symptoms at this point?
My daughter shows no signs, is a vegetarian and very physically active. My 19 year old son was diagnosed with raynodes a few years ago.
As for myself and treatment going forward, my rheumatologist,seeing I had negative bloodwork,told me to go back to my allergist. My ENT originally suspected autoimmune and sent me to this rheumatologist in the first place…I could go back to the ENT Dr for a lip biopsy and diagnoses…or wait for NIH study And I’m not sure when that will be…Maybe 3 months. Good question…who would be treating me in the end?
Raynauds can be associated with autoimmune disease. I’ve had it since I was a kid, and after I had my first baby it got severe, as in frostbite on my toes. Your nineteen year old is the one that I would be keeping an eye out on right now. It’s up to you whether to do the autoimmune panel at this point or not.
I would definitely see an ENT and a ophthalmologist. I us restasis and systane jell at night ( helps big time) and use systane anytime jell during the day. The ENT needs to have a good look at your throat as well. I am so sorry you have so much pain in your mouth and throat. I would start with the ENT! Did your Rheumy do specific test for Sjogren's? It took me pushing for referals before I was diagnosed as well. I also have fatigue and joint/tendon pain. Especially in hands, feet, elbows and knees. After I was diagnosed my rheumy started my on Plaqunil. It was rough at first but am really having some relief! Not a cure but seems to be slowing the attach for now. I support you in being heard and receiving the treatment you need.
I would definitely see an ENT and a ophthalmologist. I us restasis and systane jell at night ( helps big time) and use systane anytime jell during the day. The ENT needs to have a good look at your throat as well. I am so sorry you have so much pain in your mouth and throat. I would start with the ENT! Did your Rheumy do specific test for Sjogren's? It took me pushing for referals before I was diagnosed as well. I also have fatigue and joint/tendon pain. Especially in hands, feet, elbows and knees. After I was diagnosed my rheumy started my on Plaqunil. It was rough at first but am really having some relief! Not a cure but seems to be slowing the attach for now. I support you in being heard and receiving the treatment you need.
Find a doctor that will listen to you! They say on here often. You are your own advocate. I believe that I have sjordgen's, but it's not been proven. I have almost all of your symptoms. I get new ones every few months. I am on hold for the moment. I have an appointment with a rhuemy but not until April. The wait is killing me, but...what other option do I have. Find someone to listen and don't stop til you do. I finally found a PCP that listens and a dentist, so I'm on my way. Good luck to you.
Find another Rhuemy not in the same group. Keep pushing until someone listens to you!!!! We have all been where you are its not a good place to be. Good luck!!!
I had been having crazy neurological symptoms; dry eyes & mouth for over a year when my neurologist ordered a bunch of bloodwork. Everything came back normal except for my SSB was positive. That's the first time I ever heard of Sjogren's. The first rheumy that I saw basically dismissed it and said that I might have fibromyalgia. I ended up requesting a referral from my PCP for a second opinion which lead to my Sjogren's diagnosis from a rheumy who is an associate professor at a teaching hospital. My lip biopsy was negative; however, he believes in looking at the whole picture and diagnosed me based on my symptoms and positive SSB.
As others have mentioned, get a second opinion. Best of luck and hang in there!