still a mystery...what kind of doctor to see

[LIZZIE LOU]

4 years ago i awoke to a mouthful of painful mouth ulcers/blisters.  i was on a cruise to mexico and had consumed quite a bit of tecate beer with lime and salt so i just attributed the ulcers to that.

they never went away ! ! !

for four years now, i have had non stop blistering in my mouth.  at any given time...there can be anywhere from 2 or 3 to 10 or more.  the most painful are the ones that will rim my lips and due to the fact that my mouth is soooooo dry...my lips will stick together.  i have to take steroids (prednisone) to "somewhat" clear them up...but it is right back to a mouthful within a week or so.

i must admit that i do not take care of my own health...always taking care of other's needs before my own...but i am soooo ready to find out what is going on with my health and hopefully find some relief.

a little history...that now added up...might amount to something.

dry eyes (cannot wear contacts at all...feels like sand in eyes)
mouth sores
extremely dry mouth (have to drink something all the time)
sores in nose (as of last 3 months)
thyroid nodules found a year ago (had mri and cat scan)
i have always had stomach issues...chronic diarrhea
lactose intolerant
generalized fatigue
headaches
arthritis type pain (but i'm 53 years old)

was seen by GP and oral surgeon.  oral surgeon did a biopsy to rule out phemphigus.  all i was told was that i did not have that.  went to emory university to see a specialist and another biopsy was performed. he told me that he thought the mouth sores were coming from my stomach issues and ordered blood work (which i hate to admit that i never followed up on).  he also suggested that i may have celiac disease.

moved and started with a new doctor...actually i see the PA.  he immediately said that he thought i might have sjogren's instead of celiac and asked me to go look it up and see what i thought.  i have to agree that it "seems" more in line with what all is going on with me.

as i stated earlier...i am ready to get to the bottom of this.  if at all possible...i dont want to spend months or even years shopping from one doctor to another.  any suggestions about what kind of doctor/specialist i should see?  

has anyone experienced these mouth ulcers like i have?  if so...what have you done for them and has it been successful?  on top of the prednisone...i also have the magic mouthwash that i use to numb the pain...but sometimes it burns too bad to even use.

I'M ABOUT TO LOOSE MY MIND ! ! ! ! !

[LIZZIE LOU]

i had a colonoscopy and endoscopy this morning and everything was good.  all they found were a few polyps and those were removed.  he did some biopsies and will get those reports soon.
this doctor did start me on higher doses of prednisone a week ago today...saying that the dose i had been on wouldnt touch my mouth issues.  i have to say it's working...NO ULCERS at the present time...woohoooooo ! ! !

next stop...rheumatologist.

[LIZZIE LOU]

to add...

i just looked up the specialist i was sent to at emory university.  he is director of the dermatology immunology dept and head of the dermatology section.  one of his specialties is autoimmune disease.

i think that i will get my doctor to send a medical release of information so that i can get my records.  at least i might be able to get the blood work done that he had ordered...and that might head me in the right direction.

[LIZZIE LOU]

i will definitely start with a rheumatologist.  thank you so much :)

i have NOT been "diagnosed" with anything, as of yet.  along with the blood work that i did not do...YIKES...i am also supposed to see a gastro and have the dreaded colonoscopy...OUCH ! ! !  i also just had my first bout with diverticulitis a few months ago that sent me to the emergency room...and have had 2-3 rounds with it since then.

omg...the gluten free diet just overwhelms me...i'm EXTREMELY ADHD.  i cant even begin to understand all of that.  i dont really eat alot of meat...so only having fruits and vegetables the rest of my life is a scary thing...so i guess i just BLOCK this from my mind...like it's going to go away.

guess it's time to get serious...

thanks

[nursegirl6572]

(((lizzie)))

I have to agree that a visit to a rheumatoid specialist would be a great start...they could work you up and either confirm or rule out Sjogren's.  I may have misunderstood...but do you already HAVE a celiac diagnosis, or is that just something else that is being considered?  I see that you have a significant amount of symptoms that could be related to Celiac Sprue.  If you haven't been "officially" Dx'ed with Celiac...have you ever tried a trial with a gluten free diet?  If not...I would HIGHLY recommend that as a good starting place while you are following up with your doctor, and any specialist.

Hope you're feeling better soon.:0(

[TrudieC]

Your symptoms are also very indicative of Lupus and often Sjogren's can go along with that.  Do get your GP to send you to a rheumatologist to be checked out.