Not sure where to go from here

[aurelia]

My problem started in 1999 when I was pregnant with my first child. I was experiencing pain in my ears that I thought was an inner ear infection. Every time I went into the doc. to have it check they would tell me my ears looked fine, I knew they weren?t fine, the pain was horrible. I then started experiencing the swelling, mostly in the right side. Finally in 2001 I went into the ER; my right side of my face was swollen to the size of a baseball.
   They sent me to a Nose, Ear, Throat specialist; he suggested I have an MRI to see if there was a blockage in the Parotid Gland. The MRI came back negative, my diagnoses was chronic inflammation of the Parotid Gland. Was told to take Ibuprofen, and suck on lemon drops.
So that?s where I left it. My inflammations seemed to almost disappear for awhile, until the last 2-3 months. Now I have a flare up at least twice a week. I came across a web site talking about Sjogrens and I had a sense of relief. Now I have been noticing different aliments that I am not sure if I should seek medical attention or not.
   My lower right side of my back is aching ( around where I guess my Kidneys would be located), Sat I woke up to a sore neck, I have a lump very tender to touch, I am thinking a swollen lymph node, and yesterday I noticed a tender lump below my collar bone. I really don?t experience dry eyes; my mouth is usually dry in the mornings. But I do have horrible fatigue issues. I get 7-8 hours of sleep a night, have a hard time waking up, and usually fall asleep at work on and off through the day.
Does anyone else experience the same problems? Any suggestions would be awesome!!
Thanks

[missyb]

My suggestion would be to vsist the ENT again, preferably the same one who has a record of your history. Not to be a freaker outter, but I think the the lump businsess needs to get checked out right away to make this isn't some form of slow growing lymphoma. Once you have that out of the way, if the ENT has no further advice, see a rheumatologist. The areas you are describing are the along the string of lymph glands the go from under your jaw, down to the collar bone, and lead to the chest. That would be the first thing I would do.

[aurelia]

My problem is the ENT i went to is in a different state ( i moved since then) I don't have a regular doc. So do I find an new GP or try to make an appiontment with another spealist?

[missyb]

I guess it depends on yor insurance, if you have it. If you can make an appt with an ENT on your own without a referral, I would start there since that is who a GP would refer you to and it will take probably a few weeks to get into a good one. Since you need a GP anyways, I also would find one of those as well in the mean time..When you find an ENT to go to, contact the former ENT office and have them fax those old records to the new Dr in your new state so they are there before your appt. for the new Dr.

[sikalot]

not to be a freaker-outter either but 2 words u said in the same sentence lump and collar bone scare me and think lymphoma but normally they are painless but please get ir checked

[missy1306]

Aurelia, you might ask your GP about going to a rheumatologist too. I know sometimes ENT will focus more specifically ear, nose & throat rather than the whole system. With the fatique it  might be better to go to a Rheumy first then see and ENT if needed. Just a suggestion.  I hope you feel better soon.

[aurelia]

I went into a Health Clinic yesterday (probably my first mistake), was told to watch the lumps for a week and then come back if there was no change, or it got worse. I can't get into another GP until the 7th.  The doc from yesterday wasn't sure if it was a lymph node swollen or a muscle swollen.  So I guess I'll watch the lumps and wait until next week.  I was thinking of going ahead and getting my blood work done, is there any specific test I should be requesting?  Thanks for all the input, and advise. 

[Chickpea]

Hi Aurelia

Your symptoms are very familiar to lots of us.  I hope you feel at home here and we can help you through this worrying time.

Where do you live?  Maybe you could post an enquiry here for someone living near you who could recommend a GP who knows about SjS and other AIs.  And a local rheumatologist you could be referred to.  Or even just one of them.  Ideally we'd all have a GP who understands all about SjS and can take general care of us, plus good specialists we can be referred to for specific issues.  But that's in an ideal world!

There are specific blood tests for SjS but the rheumy should be able to organise those.  You can help by keeping a symptom diary every day.  Note down everything even if you're not sure it's relevant:  all aches and pains; times of sleep; appetite and digestion; exhaustion; mood etc etc.

I hope you get some answers soon.  Keep posting here and letting us know how you are feeling.

Thinking of you - Chickpea

[Victoria05202000]

Aurelia,

Hi and welcome. You sound pretty much like me to a "T".  I got pregnant...noticed symptoms of painful ear and swollen gland. Was checked for a blockage and was given the lemon drop and painkiller thing.  They eventually became less...then came back fierce! Swollen lymphnodes under the armpit area in and around neck area.

I didn't really have a problem with dry eyes or mouth....the 2 most common things, but I do now.

Get an appointment with a rhuemy and tell him to test your blood. Tell him to include Sjogrens.

Hope you feel better soon!
Vicky

[aurelia]

       Thanks for the advice. Its a great feeling to have people with the same issues, (makes me feel like I am not crazy) 

I live in Southern Idaho, the closest city is Pocatello.  I am also about 120 miles from Salt Lake City.  If there is anyone near me that can refer me to a GP that has knowledge of Sjogrens that would be great! 

Hope everyone has a wonderful weekend and HAPPY FOURTH OF JULY!!!!!!

[Patze]

Hi aurelia,

Let me also welcome you to the SJS World!  Look around the board as there are tons of topics that you might find interesting, I know I sure do!

The others have given you a ton of good information already, and there's not much I can add.

I'm sorry, but I'm on the east coast and I don't know of any physicians in your local area.  Hopefully a member will stop by soon and be able to give you a name or two.

Hang in there, and keep us updated, okay?

Take care -

Patze