Unfortunately, I know quite a bit about Sjogren's Syndrome. I was diagnosed with it along with lupus back in 1999. I have since had my left Parodid Gland removed due to a B-cell Lymphoma I had. Sjogren's Syndrome causes dry eyes and dry mouth and is VERY annoying! Drink lots of water and use lots of saline eye drops, but other than that I have not found anything to help with the disease. I would also love for Dr. Oz to do a show about this along with lupus. I know these diseases affect many of us, and I would love to know if there is anything out there to help us! Unfortunately, mine is getting worse and worse as time goes on, but I always try to stay positive and be grateful for the good days I do have. Good luck with everything! Deana

Hi.

Sjogren's is a relatively rare disease and it is called a "connective tissue disorder". It can be by itself or it can be accompanied with another condition: RhA or Lupus. It can manifest within the feet as well by making them dryer. You need to keep ontop of this because dryness can lead to cracks, which can lead to fissuring which can lead to bacterial infection. Vasculitis can also be common in the toes.

Regards

Dominic

I agree with what you said. I am a 32 year old mother of two with this disease. I was first diagnose with lupus plus sjogrens syndrome. Here lately my ANA testing for lupus has been normal but sjorens has been elevated. I hope they do a show on this too. Lately I've been getting the ulser in my mouth. I feel tired and weak all the time. My short term memory is getting bad. Have anyone been having those problems too.

Lavette

I would love to see a show on this disease! I have been living with this for 5 years now. I am so tired all the time. I am constantly drinking water and putting on lotion. I keep trying to exercise. I have polymyositis with the sjorgren's syndrome, this effects my muscles, so it is difficult for me to get out of a chair, the car and especially up stairs. I have been giving myself shots of a cancer drug for 5 years now and wonder how it will effect the rest of my body.

Karen

Karen,

I have had a small mass noted on my parotid gland. Needle biopsy didn't pick up anything. I guess it is still too small. However, I have suffered enlarged lymph nodes in my neck, behind my ears and on back of head. Under my tong as well and It hurts so badly. Fatigue makes it worse and the only thing that makes the swelling of the facial glands to go down is SLEEP and lots of it. If I over do it during the week and push myself to much it flares right back up. So I find working to be difficult due to job stress etc. Also I have had left leg pain and muscle problems in my left foot and calf. I recently had a fasciotomy done as well as a gastroc recession. The doctor said my calf muslce was so short and tight it was crazy. I have less pain in my heel now but still flares up at times and can't exercise, walk or stand. My calf and foot muscles tighten up all the time limiting my activitiy. I can't sit long as sometimes that makes the leg and foot pain start up, but I can't stand long or walk long distances either. I was diagnosed with Celiac this past April. I have major hives and allergies to everything. My immune system is always flared up on a daily basis. I have depression and feel like I am going to go crazy somedays because my memory has taken a huge turn for the worst in the past year. I am 41 and didn't know where I was going in the car. That happened twice, and I can't function at a job. I can't remember the things I need to do. I am so frustrated. No one has ever diagnosed me with Sjogren's but I have always wondered about this. What is the exact tests they do to diagnose this disease. I have been checked for Lupus since 1995 and it never is positive. I have had optic neuritis and once had been thought to have MS. After 9 months of Avonex injections I went into a remission. Now things are all flared up with immune and muscles, and memory I am going nuts. Can anyone HELP me.

Mom of 3 in Minnesota

I have had a small mass groing on my parotid gland now since 2003 it was first noted on an MRI. I was told it had enlarged in 2008 when a radiologist read an MRI of the head I had to do. I have had enlarged painful glands under my tongue,neck behind ears and on back of head for years. Fatigue would trigger them and make them worse. Sleep made them better. No one can figure out what I have. I have wondered about this Sjogren's. What test can they do to diagnose this? I do not have Lupus, that I have been tested for. I do have allergies to wheat, eggs, milk protiens so all dairy, fruits, you name it. Every medication you can think of gives me hives or severe inflammation of my abdomen or swelling of my throat. I am so sick of this. Why can't they figure me out? I saw an endocrinologist and he suggested I go on a Gluten free diet so I did and it has helped but I can't eat that way every day routinely. I can't afford to. My immune system is so messed up I need major help. So what can one do about this Sjogren's once they tell you that is what you have? What is the prognosis and future?

Mom in MN

When I was 16, what seemed like over night, a large growth popped up on the side of my neck. My parents took me to the MD who treated me with antibiotics to rule out an infection. When the mass got larger I eventually was sent to a surgeon to have it removed. The mass ended up being a large tumor on my parotid gland. Fast forward about 25 years. I presented with joint swelling, Raynaud's, antiphospholipid antibodies and Sjogren's antibodies! It is now suspected that tumor was the beginning of all these auto-immune issues. I haven't been formally diagnosed with anything but continue to see a rheumatologist regularly. Sjogren's is an odd and difficult entity. I know in its most severest form, it can really be devastating..................