Author Topic: Newly Diagnosed and A Big Thank you!  (Read 4725 times)

YYC_ Mommy

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Newly Diagnosed and A Big Thank you!
« on: December 14, 2009, 06:03:13 PM »
Hello, I have been recently diagnosed with SJS (in September) and I first want to say thank you for this site and the amazing people on it. I have been reading and learning so much from all your posts but today, I finally felt like I had to post something.

I was diagnosed by my GP after ruling out just about everything, she told me that I had a positive result for Sjogren's and it fits my symptoms. I have dry eyes, back in the summer I had to stop wearing my contacts as it was just to painful. I do have a dry mouth from time to time. I have been having GI issues and the most bothersome for me is the fatigue and the terrible joint/muscle pains. She prescribed Celebrex (which I have not taken yet until I get the results from my GI tests) to me and referred me onto a Rheumy and a GI specialist.

I have since began having sort of electrical shocks through out my body and my face that are usually worse at night. I have already been into see the GI specialist and I go back this week for some results of the tests and biopsies.

Which sort of brings me to today...I heard back from my GP's office and they have an appointment for me to see the Rheumy..........NOVEMBER 10, 2010 !!!

This is heartbreaking for me to think that I will have to wait for almost a year to maybe begin to feel better? I have 2 small children and although I don't want this disease to define me, sometimes it is so hard!

I am hopeful that the GI results MAY give me some direction and then I can begin on Celbrex and I have read some other posts here that it does seem to help some. I am VERy afraid of the side effects of it though.

voiceteacher

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Re: Newly Diagnosed and A Big Thank you!
« Reply #1 on: December 14, 2009, 06:13:24 PM »
Where do you live????  Are they KIDDING about November 2010?????  That's unheard of - I'm so sorry.  Personally I'd get another referrel - I wouldn't wait that long - - I might keep that appt just for second opinion if it's needed but I'd find another rheumy first.  I'm so sorry for your diagnosis and your pain.  This board is fantastic - I read it everyday.  Welcome and join in whenever you have something you'd like to say!!

Voiceteacher

YYC_ Mommy

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Re: Newly Diagnosed and A Big Thank you!
« Reply #2 on: December 14, 2009, 06:39:24 PM »
Thank you Voiceteacher! I live in Canada and I only waited 4 weeks to see the GI specialist however to see the Rheumy is not until November 10, 2010! I made an appointment with my GP as well for early January to see if she can perhaps refer me to a different Rheumy.

I agree this is a fantastic place, it is not often that you can find a place where you really feel like you belong right off the bat. I have learnt so much already and it is no nice to know that I am not alone. I have 2 great kids, a great husband and a great family BUT they just don't really understand what I am going through but here everyone does. What a wonderful feeling:)

JannaLee

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Re: Newly Diagnosed and A Big Thank you!
« Reply #3 on: December 14, 2009, 10:09:02 PM »
Hi Mommy,

I suppose if there is no way to be seen by a specialist for a year your primary doc should get out the old medical books and treat you till then.  For Pete's sake, do they think you can put your life on hold for that long!?  I cannot imagine in today's world that is acceptable.

Welcome to our site, I look forward to knowing you better!

Janna

Bucky

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Re: Newly Diagnosed and A Big Thank you!
« Reply #4 on: December 15, 2009, 06:47:06 AM »
Hi YYC-Mommy - welcome to your new Sjoggie family who totally understand about the fatigue, dry eyes, dry mouth, etc.  It's not uncommon here in the states to have a three month wait to get in to see a Rheumy - but a year??   :o  That seems a bit extreme!!  I would call them and ask them to confirm the date as you must have written it down wrong (just saying that so they will double check themselves!).

If there is a certain subject you are interested in, you can put that in the Search box to the top left and it will bring up all the previous posts about it.  If you don't find what you're looking for, you can post it and the members will jump in and offer their advice, experience, etc.

This forum is of course about Sjogren's and the daily struggles we have with this disease, but . . it is also about other things too.  You can share a favorite recipe, quote, poem, or whatever here on the "Social" Board/  Some times we all just need a good laugh to distract us and make us smile.   ;D

Again, welcome.  If I were you, I'd give them a call and just ask about the date they gave you.  I'm hoping it was a mistake on their part!!

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

YYC_ Mommy

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Re: Newly Diagnosed and A Big Thank you!
« Reply #5 on: December 15, 2009, 09:23:10 AM »
Thanks Bucky! I did call them this morning to confirm and they said that the appointment for November 10, 2010 is correct! I have an appointment with my GP on January 6th, as JannaLee suggested, I am going to ask my GP if she can't help me more until I get into see a Rheumy. She is a great GP so I am sure that she will do her homework. I have also learned from this site that I need to be my best advocate, so I too will bring information to her. I am also going to ask if maybe there is another doctor that she can refer me to that can see me sooner. I had no problem in seeing the GI specialist that she sent me to, I got in within one month.

In the meantime, I go on Thursday to get some results from my GI doctor. After I find out the results I should be able to begin to take the Celebrex that my GP prescribed, however I see that most people on here take Planquenil.

Thanks for letting me talk this out...I just had high hopes that once I got to see a Rheumy that I would be able to feel better. Maybe this was wishful thinking but to feel like this without help for a year was heartbreaking! I know now that I have to take control and do what I can!

eyeamdry

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Re: Newly Diagnosed and A Big Thank you!
« Reply #6 on: December 15, 2009, 12:48:23 PM »
yyc, MY gp IS very good at pitching in and helping with the treatment.  Maybe yours is going to be as good.  They can prescribe what they need to.  Lucy

YYC_ Mommy

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Re: Newly Diagnosed and A Big Thank you!
« Reply #7 on: December 15, 2009, 04:33:53 PM »
Thanks eyeamdry, I sure hope that my GP is!! She is a great doctor so I think that she will be....fingers crossed!!

JannaLee

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Re: Newly Diagnosed and A Big Thank you!
« Reply #8 on: December 16, 2009, 05:55:08 AM »
YYC,

I think an immunologist can also treat autoimmune disease.  Maybe there is one in your area who can see you sooner than a year out.

Janna

YYC_ Mommy

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Re: Newly Diagnosed and A Big Thank you!
« Reply #9 on: December 16, 2009, 09:49:02 AM »
Thanks Janna, that is a great suggestion. I will check with my GP and see if I can't get into see one sooner than the Rheumy.


Prairie Gal

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Re: Newly Diagnosed and A Big Thank you!
« Reply #10 on: December 16, 2009, 07:38:59 PM »
YYC Mommy - I see you're using the Calgary airport code in your name so am wondering if you live there.  I grew up in Saskatchewan, and lived in Calgary for a while (mid '60s).  I'm sorry to hear you've been told you have to wait until January 2010 to see a rheumatologist.  My mother still lives in Saskatoon and I think it helps to explain in vivid detail to your GP how much your symptoms are affecting you.   Early Dx of SjS is half the battle, as is early treatment and if you can make your GP understand, maybe he/she can help facilitate an appt. for you. 

  Another possibility:  some dentists are very good at spotting possible SjS because of the damage lack of saliva does to your teeth.   I don't know if your dentist is one of them, but not having enough saliva can create horrendous dental problems.  I wonder if your GP is familiar with that aspect. 

You can end up with scratches on your corneas if your eyes are severely dry.  Do you use OTC drops of any kind?  (I can't remember if you mentioned dry eyes as one of your symptoms.)  Symptoms vary in their intensity from one person to another, but severe ones can make daily living very uncomfortable if you don't have the proper remedies.  It might take you a long time to get an appt. with an Opthalmalogist, too, but there are tests they can do to see how dry your eyes are.   Look up Schirmer's test for information on one of the tests.  Jiminy Cricket, it sounds like I'm trying to scare you to death!  Actually, I'm trying to give you some ammunition with which to hit your GP in the hope it'll help.

I was fortunate to be diagnosed early.  I remember it was very disconcerting to wake up at night with my tongue stuck to the roof of my mouth, to be very light-sensitive outside, etc.   Dry mouth and dry eyes are the 'hallmark' symptoms of SjS, but there are many others that many people aren't aware of.   I started taking Plaquenil in Nov. 2001 and after 4? months, noticed improvement that has steadily continued.   I seldom have much joint/muscle pain anymore, and my dry mouth and eyes are fine now.   I use just OTC products but there are Rx products that can help severe symptoms:  Restasis for dry eyes helps many patients; Evoxac is one that helps dry mouth.

 Celebrex may help your pain, but Plaquenil is an immunosuppresant; my rheumy says it slows down the progression of the syndrome.   Have you done any research online about SjS?   Maybe your GP would be open to getting more information, since many drs. know little about SjS, though it's now considered, after rheumatoid arthritis, the second-most common autoimmune disease.   You could Google the American College of Rheumatology (I'm not sure if there's a Canadian equivalent) and find information there, for example. 

I checked the Sjogren's Syndrome Foundation site (I'm a member - joined a few months after my Dx) and they have a list of Support Groups.  The only one listed for Alberta -- if that's where you live -- is a lady in Edmonton.  She would definitely be willing to talk to you, since she's listed as the contact:    Sandra Anderson (780) 434-8808.   

I hope some of this helps you a bit, YYC Mommy.  Meanwhile, try to get as much rest as possible and avoid stress, if you can, because pacing yourself is one of the keys to living with this chronic condition.  I've learned to deal with it with help from a good rheumy, so I hope you get to see one well before January 2010.

Take care,
Prairie Gal

YYC_ Mommy

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Re: Newly Diagnosed and A Big Thank you!
« Reply #11 on: December 16, 2009, 09:27:31 PM »
Hi Prairie Gal, yes I live in Calgary.

Thank you so much for all the information. I have recently seen my dentist and I did not have any cavities which I understand can be a problem. He told me get a special kind of toothpaste...the name escapes me at the moment...and also said to use an Oral B rinse. He did not prescribe anything for my dry mouth as we thought that I would be seeing the Rheumy soon.......not in 11 months!! I too wake up with a really dry mouth not prior to my DX I just thought it must be that dry air! I do have dry eyes as well, joint and muscle pain, strange electric shock type things through out my body as well.

I will see how far I get at the GP appointment in January and hopefully she can help either finding a Rheumy that can see me sooner or treating me until them. I will ask my GP about Plaquenil as it seems to be mentioned here often. I think that when she prescribed the Celebrex she was looking at only my joint pain but if Plaquenil could help more of my symptoms, that might be the way to go.

I recently found an optometrist here that has a special interest in Sjogren's syndrome, so I am going to try and get into see her although I have already made an appointment with my current optometrist for the end of January. I might end up cancelling with my current optometrist if I can see the other one sooner, especially since she is keen on seeing people with SJS.

I will give the gal in Edmonton a call as well, thanks for the contact information. More information is always better! Thanks again for all the information as well as hearing your own story, it gives me hope.

Do you still live in Canada?

Prairie Gal

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Re: Newly Diagnosed and A Big Thank you!
« Reply #12 on: December 17, 2009, 02:09:24 PM »
YYC Mommy, I'm glad you're checking further into an optometrist who has an interest in SjS patients.  Meanwhile, if your eyes are dry, go to the drugstore and find some artificial tears if you don't already use them.   Buy a small bottle, because everybody is different as to which brands work for them.  I rotate among Optive, Refresh and Systane.  I also use Refresh Liquidgel at night; it's thicker and so lasts longer.   Since I usually only use drops 4x/day, I use the bottled ones which have preservatives.  If you use them more often than that, the preservatives can be a problem, so there are single-use vials available in each brand, also.

 On the rare occasions my eyes are really bothering me, I use the ones called Celluvisc -- really thick, so your vision is blurry for about 10 minutes.  But they make your eyes feel better.   I stand the vial up in a clean old prescription bottle, since there's enough in the vials for more than one use.   I used to have to do the warm compress thing with my eyes quite often until a few years ago.  Heat a damp washcloth in the microwave for 10 seconds (not too hot!) and hold that across your eyes.  Keep warming up the washcloth, because you'll need to do this for 5-7 minutes.  Then, with your finger, stroke along the upper lid, starting near your nose.   That's where the oil glands are located and the warmth helps stimulate more of it.  Our tears have three layers:  one watery, one mucous-like, and one oily.  My old opthalmologist said just think of salad dressing! 

My eyes, mouth, and joints/muscles bother me very little now, but it took a number of years of treatment to get to this  point.   As I said before, I've been on Plaquenil (the generic) since Nov. 2001 and it took over 4 months to see any improvement; some patients say it takes 6-7 months -- it's a slow process.  I also misspoke when I said Plaquenil is an immunosuppressant.  It's a DMARD (disease-modifying anti-rheumatic drug) that is used for malaria, but they discovered it works well for Rheumatoid Arthritis, SjS, and other autoimmune problems.

My husband and I have lived in the San Francisco Bay Area for 36 years now; I lucked out in getting an excellent rheumy at Kaiser, our HMO.  I was tentatively diagnosed within 7 weeks of first seeing a dr. because of my first weird symptoms:  felt like something was biting me all up and down my legs.  With an HMO, you have a primary dr., but can see anyone if your primary is booked up.   That's what happened to me:  4 times I saw a different GP and most of them ran different tests that all came back normal.  I would call back after getting the results and say there was still something wrong and I needed to see someone.   The 4th dr. looked at all the test results and listened to me describe my symptoms.  I also remembered to tell him my brother had had an autoimmune problem -- not SjS, but autoimmune problems often seem to run in families.  He decided I needed to see a rheumy and 3 weeks later, I did.   

It was during that 3-week period that my tongue started sticking to the roof of my mouth.  When I saw the rheumy, one of the things he asked was whether I could eat a cracker without drinking.  I said no, not lately.   He reviewed my symptoms, tentatively diagnosed SjS and said to come back in 3 months and if my mouth was still dry, he'd order a lip biopsy.  Three months is the typical period I've read they wait to check if dry mouth symptoms remain, since so many things can cause dry mouth.   He said I could start on Plaquenil, but I preferred waiting until we got the results of the lip biopsy.  He scheduled it after my second visit and the biopsy was positive for Sjs when the results came back.  So I started on Plaquenil.   I get my eyes checked annually by an opthalmologist; one of the side effects of Plaquenil, though rare, is that it can affect your color vision.  When I first asked my rheumy about possible side effects, he said, "You'd stop being able to see red."  Then he added that discontinuing the Plaquenil usually reverses side effects.

Unfortunately, SjS is v. difficult to Dx because not everybody gets all the same symptoms,  My SSA, SSB, and ANA blood work all came back normal, as it does for many of us.  Not every rheumy is willing to treat you for SjS in such instances.  Some SjS patients undergo lip biopsies that don't show infiltration of the salivary glands and, again, their rheumy won't treat them for SjS. 

I've done a lot of reading about SjS and a good friend is a medical librarian; from time to time she brings me articles on SjS from recent medical journals.  There are also some useful books; the older edition of the New Sjogren's Syndrome Foundation handbook is better than the newer edition, in my opinion, because is has tips to help make daily living comfortable.  It's available on the Sjogren's Syndrome Foundation website as is a small one with a green cover (can't remember the name) that I think is helpful; it was written by a SjS patient, as I recall.

SjS is a collection of symptoms, some of which can be v. serious.  I'm fortunate that mine aren't severe.  That's why my rheumy has had me taking several OTC supplements; my symptoms, so far, are controllable without  too many drugs.  It still bugs me at times -- a chronic condition like this means you have to deal with it day in and day out, month after month.   But I've gotten used to the routine now.

Oh, I use Biotene toothpaste and ACT mouthwash with fluoride per my dentist's instructions.   Look for mouthwash without alcohol if you can't find the ACT brand, because alcohol dries out your mouth.  I also buy OralBalance, which is a gel made by Biotene.  It comes in a small toothpaste-style tube and I  use it one or twice when I wake up at night with a dry mouth --  I'm a mouth breather.  But my tongue quit sticking to the roof of my mouth ages ago after taking Plaquenil.   I drink decaf and avoid liquor most of the time because caffeine and alcohol both make your mouth dry.

There's more I could tell you, but I'm getting writer's cramp!   :D 

Take care,
Prairie gal

YYC_ Mommy

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Re: Newly Diagnosed and A Big Thank you!
« Reply #13 on: December 18, 2009, 07:21:48 PM »
Thank you so much for all the information Prairie Gal, I truly appreciate it.

Prairie Gal

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Re: Newly Diagnosed and A Big Thank you!
« Reply #14 on: December 21, 2009, 01:54:45 PM »
You're welcome!  I hope some of the info will help you.  We're all a bit different in how SjS hits us, but if you check this board regularly you'll find someone who is currently having a flare up in their symptoms and asking for suggestions in how to handle them.

Prairie gal