Always something

[angel216]

So I ended triple tx in May 2013. I am still UND which I'm grateful for. The issues I'm dealing with now makes me question the treatment a lot!!!! I've been labeled with fibromyalgia. Whatever all I know is I hurt all the time. Now I'm dealing with dental issues. My dentist told me today that he was referring me to an oral surgeon cause the right side of my mouth is swollen to about 4times the normal size. He says it's my partoid gland.(saliva) I'm gunna be honest ....I'm nervous. It's made my face swell and hurts to eat on that side.  I'm praying it's nothing too serious. He said maybe a stone or cysts or worse. Has anyone else had to deal with anything like this?

[pooh55811]

It is really good news that you do not have a mass.

I would suggest seeing a Rheumatologist as well as an ENT doctor.

And your doctor is wrong. Not all people with Sjogren's have joint pain. In fact, many do not.

However, you do have a lot of pain, so much that you have been told you have fibromyalgia. So you do have pain.

I think a Rheumatologist would be of great help in finding out what is wrong with you. Just be sure you get a good one.

[dontworry_behappy1]

You need to find out what is causing this.  Ask for a referral to an ENT.   The answer you are getting (nothing that can be done) is ridiculous.  Hepatitis C treatment is extremely toxic.  Sure I felt like I had fibromyalgia too after treatment.  Hepatitis C treatment really weakens  your muscles.  Your body has many in the strangest places.  This effect blew my mind at how sore I was.  Before treatment I was exceptional strong and it's take the better part of two years to feel like my hips weren't going to pop out of their joints.  Hepatitis C treatment seems to bring out the weakness in your body.  Like the wrecking  of your muscle as a product of not only sitting around but the very toxin in the treatment drugs.  

Weakness in joints and pain have many causes.  I would ask for a referral
to have complete body work up including checking out your heart.  

Best to you

[angel216]

So my doc called yesterday. He said the Ct scan showed no mass?!? Amazing!!! In his office he said it was a 4cm mass. Prayers are answered!!!!  He is slightly concerned cause there's no saliva coming from that gland. He talked to an ENT and he said there wasn't much that could be done cause there's no mass or stone. I asked him about sjogrens . He said that I would have joint pain with it. I said doc you have no idea how bad I hurt. So not sure really what's goin on

[pooh55811]

It is normal and very understandable to be scared when one is told one has a mass. Lack of information only fuels this apprehension. Is there any way you can talk with the oral surgeon to see what he thinks about the CT scan and your possible diagnosis? Let him know how scared you are and that you really need to have as much information as possible. The more accurate information you can get, the less apprehensive you will be.

I truly hope this is a benign mass that can be easily treated.

[Frank J. Perrotta]

It is most common to do a CT first then gain some knowledge as to what you are dealing with.

Usually a biopsy is not a big deal but it is an invasive procedure so...

[angel216]

He said it was a mass. 4cm. I've been freaking out!!!  The internet is not a good place to be when you are having health issues!! I found this thing though called warthins tumor. Sounds like my symptoms. I just pray it's not something malignant!!!! Will know tomorrow. I'm so scared!!!!

[pooh55811]

Did they say it was a mass, or did they say it was blocked? A lot of things can block it and make it swell up. Hopefully it is something that can be treated relatively easily.

I know this is very frightening. Not knowing exactly what is wrong causes fear and anxiety. It does sound like you have some good doctors who are trying to find the exact problem, which will then allow them to treat the problem. Hang in there.

Let us know what they find and what they will do about it. I am hoping it is something which can be easily treated.

[angel216]

I'm now at the hospital waiting on a CT. We know it's a blockage. A mass so why not just biopsy it.  I'm starting to freak out alittle

[pooh55811]

I will try to shed some light on the differences. Plus, I will add some links so you can read about them and that will help to explain the differences.

Keep in mind that the knowledge concerning Autoimmune Diseases is still pretty limited. There have been a lot of strides made, but there is a vast amount of information that is still unknown.

Part of that unknown information encompasses how to differentiate between the diseases because often the symptoms overlap and it is difficult to tell exactly which Autoimmune Disease a person has. Lupus has some blood markers and some symptoms that Sjogren's does not usually have. Sjogren's has some symptoms that Lupus does not usually have. Sjogren's can also be diagnosed with a salivary gland biopsy (usually). Both Lupus and Sjogren's are Autoimmune Diseases.

Usually a Rheumatologist will look at all of the various blood markers as well as the symptoms and try to figure out what the person has. There is not a specific test (other than the salivary gland test) that will tell a person for sure which disease he/she has. That is because a person can have the disease and not have the blood markers. Or, the person can have blood markers, but the markers are present in several Autoimmune Diseases so the Rheumatologist has to go on symptoms as well as other tests and information. The cluster of blood markers that are present and positive will also help determine which disease the person has. However, some people have an Autoimmune Disease but have negative blood markers. Some people just have not converted to positive yet (even though they have the symptoms and the disease). Plus,over time, the markers can change, from positive to negative, and back to positive again. So the blood may get drawn at a time when the blood markers are negative. A good Rheumatologist will be able to diagnose on symptoms and will treat according to symptoms.

Many of the symptoms for Lupus and Sjogren's are similar. Sjogren's attacks the exocrine glands (tear ducts, salivary glands, skin, etc.) but it can also attack other parts of the body systemically (lungs, kidneys, nervous system, lymphoma, etc.).

Lupus is a chronic inflammatory disease that can affect various systems of the body, especially the skin, joints, blood, and kidneys.There are three types of lupus: discoid, systemic, and drug-induced.  Discoid (cutaneous) lupus is usually, but not always limited to the skin.  

Systemic lupus is usually more severe than discoid lupus and can affect almost any organ or system of the body.  For some people, only the skin and joints will be involved.  In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected.

http://www.lupusinternational.com/About-Lupus-1-1/Lupus-and-Sjogrens-Syndrome-.aspx

http://www.lupusinternational.com/About-Lupus-1-1/What-is-Lupus-.aspx

Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe. Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain. Fibromyalgia is not considered an Autoimmune Disease, although many people with Autoimmune Diseases also have Fibromyalgia.

http://www.afsafund.org/fibromyalgia.html

http://umm.edu/health/medical/reports/articles/fibromyalgia

http://www.webmd.com/fibromyalgia/guide/what-is-fibromyalgia

[angel216]

What's the difference in fibromyalgia, lupus and sjogrens?

[angel216]

Thank you for your response . I'm literally sitting in the oral surgeons chair. He's sending me for a scan cause my gland is blocked and he doesn't know why. I read about sjogrens. I was wondering about that after I read on it. I live in alaska so our docs are not the best. I will check into a rheumy doc. I feel as though no one is really hearing me. I just wanna feel better. I started walking 2 miles a day and that helps but I'm not really understanding what's goin on with my body. Sounds crazy huh? I hope this blockage isn't anything serious. Thanks again pooh

[pooh55811]

Just wanted to add: I do have Sjogren's Disease. I have had it for decades, long before I treated for Hep C,  but I was never diagnosed until last year when I went to see a Rheumatologist. For years I had told my other doctors about my many symptoms, but they either ignored me or said I was just getting old and was overweight and that was why I was having all of the joint and muscle aches as well as fatigue, bladder symptoms, peripheral neuropathy, and several other symptoms. After Hep C treatment, I waited for a year for the side effects of the meds to dissipate. Then I sought out a good Rheumatologist at the U of MN and I saw her in July 2013.  She got a thorough history from me, did a thorough physical exam, and ran a truckload of tests. She diagnosed me with Sjogren's Disease. I was started on Hydroxychloroquin in early Sept. I continue to see my wonderful and competent Rheumatologist every 3 months for monitoring. I am feeling considerably better. I have my life back.

Just telling you my story because I was ignored and misdiagnosed for years until I got to a competent Rheumatologist who listened to me and diagnosed me. This type of thing happens very frequently with Autoimmune Diseases and it often takes people years and years and several doctors to finally get to the correct diagnosis. Too many doctors ignore or dismiss or misdiagnose people and it is the people who suffer because of this,.

[pooh55811]

I am sorry you are dealing with these issues post treatment.

I have not had parotid gland swelling. However, I wanted to mention a couple of things that you may wish to consider.

Are you seeing a Rheumatologist? If you are not seeing a Rheumatologist, I would suggest that you see an experienced and competent Rheumatologist, preferably one located at a university affiliated medical center. A Rheumatolgist will be able to assess whether you have an autoimmune issue or disease. This would be in addition to seeing the oral surgeon.

There are several causes for parotid gland swelling, including infection, stones, cysts, Sjogren's Disease, and others.

You may have fibromyalgia, but you may also have been misdiagnosed because many doctors don't know very much about Autoimmune Disorders.

If you have parotid gland swelling, you may have Sjogren's Disease, an Autoimmune Disease that affects the excretory glands as well as other parts of the body. Sjogren's can also cause a lot of joint, muscle, tendon, and body pain. Other common symptoms may be fatigue, dry eyes and mouth, gritty feeling in your eyes, trouble swallowing dry food without a liquid, getting things stuck in your throat, etc.

"The parotid glands (major salivary glands located behind the jaw) may be enlarged and painful swelling may also be noted. Enlargement of parotid or other major salivary glands occurs in two-thirds of those with primary SS"

http://www.lupus.org/answers/entry/what-do-i-need-to-know-about-sjoegrens-syndrome-and-lupus

http://www.medicinenet.com/sjogrens_syndrome/article.htm

http://www.medicinenet.com/sjogrens_syndrome/page2.htm

Wishing you the best.