???? Please help Prep me for a new Rheumy

[kimbo]

I have an appointment with a new Rhuemy next Monday 6/30. The one I have been going to is further away and although he did an excellent job in diagnosing my SJS, I feel he is waitting for me to either get worse or acquire another AI that he considers worse than SJS.
I have had many ?'s stored up. I am hoping to receive some counsel from the forum family here before that appointment.

I think my priority ? is - I was diagnosed a year ago last March thru a strongly positive blood test; at what point is it important to think about the advantage of preventting the progression with medication treatment?
 
My Paratid glands with somewhat swelling and discomfort have been the first issue, and dry throat, somewhat dry mouth not to bad, eyes feel gritty but not that bad. Dry eyes and mouth aren't really an issue to me yet.
Fatigue can hit like a big wall. When this happens it can bring depression.
I don't have joint pain yet.
I have taken Celebrex 200mg one daily, for years, because of neck issues (herniated disc) This may have been a good thing and may have helped me with symptoms in over all joint issues.
My mother has had severe RA since 29 years of age.

I get the night sweats- how does that relate to SJS or is it hormones ? (I'm 52 and still regular on Menustrations)
I urinate frequently sometimes and it seems to take longer to urinate, is that SJS?
I have had IBS for years, is that SJS?
I have bouts of constipation/ and bouts of diarrhea, is both SJS?
When I eat some times I get phlegm and it causes me to cough after I eat, is that  allergies or SJS?

About 3 months ago Anxieties and insomnia were a real problem. klonipin and ambien/ one or the other, provided some sleep.
Stress and anxieties seemed to feed off one another and was causing flare ups with my paratid glands and extreme fatigue with poor sleep.
Lexapro has seemed to help all of that. Soooooo thankful, I have not had to take klonipin or ambien for a long time.
Someday I hope to get past just mostly observing and studying all the blogs on this forum and contribute more. It has been hard for me to get the nerve up to share all this.
Your help and support will be appreciated,   kimbo

[ktfabian]

Kimbo-

It sounds to me like you've already done the preparation you need for your new doctor!  Print out your post and take it with you.  I did that recently with one of my posts, and the doctor was very impressed that the issues I needed addressed were right there in front of him to discuss one at a time.  He even checked off each issue as we discussed it and made decisions on how we were going to deal with it.

I've read many articles that say that doctors are so pressed for time these days, they actually prefer a patient who comes in with a list of symptoms or concerns so that they can get right to the point and take care of their patient without having to talk around and around the subject til the patient finally gets to what's really brought them to the office.

Good luck with your new rheumy.  I think you're right on track and hopefully, the doctor will follow your lead and take care of the concerns you've prepared for him,
Tracy

[Linda196]

Kim, I think Tracy is right, take a copy of your post with you, and your prep work is done! You have all of your questions in one place and ready to be addressed.

I do hope this new rheumy will provide treatment based on your symptoms and positive blood work. "Waiting for something to get worse" implies that SjS is simply annoying, and we know that's just not so.

[Patze]

Hi Kim,

Yep, you've already got a great head start on your new appointment, and I agree with the others, print it out and take it with you. 

I also hope that this rheumy will be proactive and not reactive for you.  Hang in there and I'll keep the fingers crossed!

Take care -

Patze

[Scottietottie]

Hi Kim 

When I go to see my rheumy I take a copy of a symptoms diary that I keep (like your post) and I also go with a separately written list of questions. I KNOW I'll forget to ask something otherwise.

He's very patient now. He lets me go through the questions and I jot down his answers too. (I don't always agree with him - but hey!) then I can ask the forum for comments after I've seen him!

IBS can certainly go along with SjS. I've been dxd with Irritable Bladder Syndrome as well as the IBS - so I guess it can go with the territory too. (IBS x 2 maybe)

Some symptoms you're never going to know if they are SjS or not because things overlap. The hot sweats could be - but they could be menopause. I'm through menopause now but everything kicked off at the same time. I still get hot sweats but I think I had them more frequently and more uncomfortably at night while the meno bit was in full swing. Not a pleasant time. I never sorted out what was thyroid, what was meno and what was SjS. Lots of it can overlap.

Good luck with the rheumy.

Take care - Scottie 

[YICKelly]

Can't add much to what has already been said.  I do know constipation is related to SjS because of the dryness factor.  Bowels need moisture to work correctly.  I do hope for a good appointment for you and please let us know how it went. 

[Billydude]

Hi Kimbo...all of the things that you mentioned can be assiociated with autonomic neuropathy which is an aspect of the Sjogrens.   I wouldn't go too far off the deep end on thinking its other things but well to get it checked.
There was an earlier post from Mike Bartowitz (WHO I MISS) that listed this link associated with night sweats.
http://www.medterms.com/script/main/art.asp?articlekey=12075
I also have autonomic neuropathy and last night my pillows were SOAKED!   
Steve

[JannaLee]

So how did your appointment go?

Is the new doc worth his salt?

Hoping you had a good visit!
Janna

[kimbo]

Billy dude, Thank you, the article was helpful.
Janna and all,
I liked this new Rhuemy. I had an ear infection and he wants me to wait and clear it up with antibiotic, get past that. He gave me lab orders for the whole thyroid thing to complete when I don't have infection that might distort the tests.
We discussed the plaqeunal treatment. As one of my ?'s was, when is it time to begin thinking about prevention of progression. I have another appt with him in a month, when I will have completed those lab tests.

Meanwhile I have fluid in both my ears constant ringing for a couple of weeks. I can't hardly hear and I am two days away from completing my antibiotic and I still have pain in my left ear.

Thank you all so much for your concern.

kimbo

[Pooh]

Hi Kim,
Glad to hear you like this new rheumy.  Don't be surprised if this first round of antibiotics doesn't clear it up completely.  If the infection had a good start, your doctor might have you repeat the antibiotics again.  This happens sometimes. 

Please let him know if it doesn't clear up when you are finished this prescription. 

Pooh

[kimbo]

Thanks Pooh.

I will. I feel a little anxious to hear normal again.  I ruptured an ear drum once years ago and it took months for recovery.
kim