Holy Toledo Batman! Have I been misdiagnosed all these years?!!

[Princess Tusi]

Hi all,

I know this isn't Sjs per se, but I'm posting here because it was following RipVann...(sorry Andrea, can't remember it) link to Cushing that brought this possibility to my attention. I was dx with PCOS in '97 but symptoms overlap with Cushing's and PCOS. Then today I looked at Andrea's story on youandme and I have that blimmin hump! Noticed it a year or so ago and queried to myself if my posture was getting bad or the top of my back was getting fat! It could be good news for me as Cushing's can be curable...

On another note: I am a month in to this horrible sinus infection - the augmentin did diddly squat and am now on cefaclor. I have no mucous, no blocked nose but my glands are torturing me - esp around jaw hinge+ears, back of neck (above hump - lol) and now breasts are painful and hot. My SIL has very lovingly taken the kids for the weekend so I can just sleep, my fatigue is back to when I had GF a couple of years ago....

I have been doing the towel over head over bowl of steaming water but haven't noticed any change yet, wasn't sure if you're supposed to irrigate when sinuses are infected? Will start on that if I get the go ahead.

I have found so many answers to things I never thought I'd be asking questions about (nocturnal activities for one - ahem)
Thanks to all for sharing, getting it out there, it sucks to know but is reassuring at the same time that someone else has been there.

Hope all are doing as well as can be
Caroline xxx

[gurs]

Caroline,

How do you know if you still have a sinus infection? could it just be inflammatory sinusitis like a lot of us have? feels just
like an infection. Also, being on antibiotics can cause more blocked sinsues and even lead to candida in there.

My allergies now are causing major sinus issues..im so plugged up and dry..ughhhh..

Unless you have a fever and green discharge, I wouldn't be on antibiotics....can your doc do a culture?

Gursie

[cccourt1942]

but my glands are torturing me - esp around jaw hinge+ears,

I would question "infection" as Gurs has after the meds.  But...stranger things have happened!  What I am really answering about is your statement above. 

I am NOT saying you have this, I am relating my experience.  Nearly 6 years ago I was picking up my granddaughter and felt a pain in my "cheek"  which almost took me to my knees.  She was going to be with me several days...and the pain was so great I was afraid to get out on the road with her in the car with me.   I went to a "doc in the box" as it was a Sunday.  The NP had zero idea what it was but gave me an Rx for antibiotic: Cephalexan.  (sp?)  Was hurting the next a.m.....by that time I realized it was my ear, or jaw area.  AND...I realized it hurt when I was salivating.  I googled painful salivation.  That sent me to the otolaryngologist...who in turn diagnosed me with sialadenitis.  It took me a month to learn how to pronounce it.  Amazingly enough he said the antibiotic Rxed the day before was the right one.  I point that out as for the next 4 1/2 years it was the only antibiotic given to me.  Quite effective...FOR ME. 

About a year or so into this condition, one day I felt a different pain.  This I could say was in my jaw.  What I did not know it WAS my jaw:  where the jawbone fits into the joint.  Hurt like the dickens.  This sends me to 4 different specialists.  Bottom line, the same otolaryngologist says it is TMJ (which I said wasn't) and gave me Xanax to relax during sleep.  I ate liquids, soft foods, yogurts, puddings (you get the idea) for 6 months.  HURT.  I could not yawn..I dared not yawn.  I held my mouth together to talk.  So much pain.  So, it's been six months and one night I accidentally yawn and forget about holding my mouth closed....and I heard a pop which echoed.  I know that is impossible, but I perceived it that way.  And instantly my jaw stopped hurting.  Well..the pain stopped.  What lingered was like a bruised feeling.  I went straight to the internet and googled jawbone pain.  (before I had searched jaw pain).  Up "out of socket " it came.  I couldn't believe it.  It even said "as we get older, our joints get looser"  etc, etc.  [btw: I do not believe one had to do with the other...but you put it in your message so tht I would tell you]

The sialadenitis persisted until about the same time I was dxed with SjS.  The ENT has said of the three pairs of salivary glands I have one parotid still producing saliva.  The remaining 5 are hardened.  During those years of sialadenitis we presume the disease was ramping up.  As all doctors will tell you, no one can say when you became positive with SjS.  My diagnosing rheumatologist says the onset of the sialadenitis is a safe bet.  I would have been about 66 at that time.  The first time my dry eyes were noted by an eye specialist I was about 40.  I used the Alcon-Naturale Tears (otc) almost all those years until dx. 

I know you said this isn't SjS, but...those words you typed told me to say: It might be. 

Best to you.  And have a great day. 
ccc

[Carolina]

So I had to look up Cushing's Syndrome:

Cushing syndrome is due to two main reasons, excessive cortisol like medications such as prednisone or a tumor that either produces or results in the production of excessive cortisol by the adrenal glands.[4] Cases due to a pituitary adenoma are known as Cushing's disease. It is the second most common cause of Cushing's syndrome after medication.

So Caroline, you should have your pituitary checked for an adenoma, unless you have been taking lots of prednisone.  And the symptoms of Cushing's Syndrome seem to overlap with PCOS.

I hope you find some relief.

Hugs,  Elaine

[anita]

Elaine is correct...you DON'T get Cushing's unless you have excessive steroid intake (usually over a period of long time) or a tumor.  What is your history with steroid use?  If you have not taken much, then you should ask for an MRI if the pituitary gland (using the pituitary protocol---yes, there is a specific protocol for a proper MRI).  Don't settle for a CT scan as the pituitary is a very small gland an most difficult to get an accurate assessment with only a CT.

If you have taken long term steroids (or still taking them), then talk to your doctor about getting off...VERY,  VERY slowly.  Cushing's usually means the body may not be making it's own cortisol anymore and therefore it can be quite difficult to get off steroids.  In some cases, the patient cannot get off completely.

Just one comment about the sinus infection.  If you have been taking steroids, then your immune system is weak and why you are having a hard time fighting the infection.  A longer than normal course of antibiotics may be required.

[Princess Tusi]

Thank you all for your replies, fortunately I'm not on steroids and have only had them a handful of times in my life (last I recall was Dexamethasone in 2006 when TTC with #2) so if it is Cushing's it will have to be a tumour. I see my GP on Mon so will raise this with her.

As for the sinuses, I don't believe the antibiotics are working and will pass on to Dr your recommendations she is very thorough and will look to cover all bases which is helpful.

However, I fear I'm being too introspective so will try to focus more on the good things going on and how others are doing.

Love and hugs to all

Caroline xxx