New to SJS

[Pisces24]

So glad I found this website right off the bat. Just signed up today. Here is my "brief" story.
I've had abnormal white cells, lymphocytes & one other blood# that had been creeping up for some time, since 1998. In 2003 my gp started sending me to drs to get a diagnosis. I got the "royal" runaround from so called specialists  for 2 years until finally one diagnosed indolent lymphoma. I started seeing an immunologist for about 2 yrs now and back in March he decided to run a test for Sjogrens. Well, I got a message yesterday that I have very high antibodies for that and they are pretty sure I have SJS so now I am to see a ruemotologist (sorry on spelling!) last of this month.

As to symptoms, wonky blood #s, I get sinus infections very easily (2-5 times yr), some lymph node swelling, and I get cavities a lot more than I used to. Found out bad cavities are a side effect and I started having the cavities problems right about the time my gp says this whole mess started.  My physical symptoms, except for the blood#s, are mostly in the winter/fall - I don't have a problem in the summer.

I will find out more on the April 23rd when I see Rh dr. I've been doing sinus flushes which seems to help some. I really don't know what to expect with the disease but I've handled it for 8+ years and already went through the "grief" process of accepting I had lymphoma. So really nothing has changed yet except a positive diagnosis. I don't know if that is a good thing or a bad thing?   

[Scottietottie]

Hi Pisces 

Welcome to Sjogren's world. You have the right attitude - nothing has actually changed! SjS isn't terminal - just interminable - and can affect people really differently to a greater or lesser degree.

Do they have the lymphoma under control? People with SjS have a bigger risk of getting it but it's still quite rare so I'm sorry it's happened to you.

At least once you have a dx you know what you're dealing with, you'll be monitored and there are meds that can help.

I hope you find the site useful.

Take care - Scottie 

[Cheryl]

Pisces,
   Having a diagnosis and seeing a rheumatologist is a good thing.  Maybe he/she will start you on Plaquenil, which is helpful to a lot of us.   Keep us posted, and best wishes.   
   Are you doing "watch and wait" with the lymphoma, or were you treated for it?
Cheryl

[Patze]

Hi Pisces,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics and oodles of information.

I'm also glad that you have some good doctors, you are soooo lucky!  I sure hope that the rheumy is as good as the other doctors that you have! 

Hang in there and let us know what the rheumy says.

Take care -

Patze

[kimbo]

Pisces,

Welcome to our world, glad you found us.

Make your self at home and enjoy a great forum full of information and encouragements.

blessings , kimbo

[eyeamdry]

Hi Pisces- (I'm one too)
Actually being diagnosed is almost always a positive thing.  If you don't have a diagnosis, some docs won't treat you.  Like one poster said, nothing has changed.  I can remember I was so sick before my diagnosis and finally the dx came through and they started me on SJS meds and I began to feel better fairly soon, although it can take a few months.  Welcome, Lucy

[Linda196]

Hello Pisces, welcome from me, as well.

Everyone is right, having an actual diagnosis doesn't change the facts, but it removes you from limbo, makes things concrete, and puts a name on your enemy, rather than just a scraggly bunch of symptoms. It also gives insurance companies one more strike to use if they get nasty about coverage, but hopefully that won't be an issue.

The grief process is a strange thing, and going through it once for lymphoma doesn't prevent dealing with it again for a different diagnosis...it may be a smoother process with experience, but it still happens to some extent.

[Pisces24]

Thank you for the warm welcome! 
I always thought a rheumatologist was for stuff like arthritis, etc. so I guess I am learning new stuff here. Actually I feel a tiny bit better about being diagnosed w/SJS. I had the one dr tell me I had indolent lymphoma and it could stay indolent for years or suddenly pop. Made me feel for awhile like I was sitting on a ticking timebomb!    I do have a thyroid condition and have Renards in a couple fingers that occurr during the cold winter. My maternal aunt had 4 girls: two 2nd cousins have immune disorders (not SJS) then 2 of their daus (3rd cousins) have something too. One has adult MS.  The descendants of the other 3 girls don't have this.

As to the lymphoma, that is what I was initially diagnosed with - after about 2 yrs and numerous drs. I'd see a dr awhile - tests run etc - then dr tell me I didn't have to come back. Then gp would tell me at my next physical my #s were still off and send me to another one, etc. etc. etc. So I am glad I got a "smart" dr now!!

I've given so much blood Dracula would be happy! 28 tubes last yr! CTs, MRIs, one biopsy lymph node and a needle aspiration. I think the drs were upset that I didn't have the symptoms they thought I should have. They'd ask me how I felt "which was nice of them" and I'd tell them I feel pretty good except you drs are driving me crazy. LOL

Yes I am no better or worse off by having a diagnosis. They could call it Xto-whatsis and it wouldn't make a difference. I go more on how I am feeling physically and mentally. I'm single with no close family (was a caretaker to my elderly folks) but I have good friends about and tons of cousins. So all in all, I feel I am a lucky gal - even with the Sjogrens.

Thank you all sooo much for the warm welcome. I'll be back again when I find out more from new dr.

[lynnmarie219]

Hi Pisces!


I just want to add my welcome to you as well! I do love your positive attitude...that will help you so much while on your journey to more answers!

I wish you well and hope you get the answers that you need so you can face exactly what you are dealing with head on...having a name to put on how we are feeling is always a good thing in my opinion, but as you said....a good attitude, your general well being, and treatment as needed is what is the most important!

Let us know how your appt goes later on this month!   

[jonnell]

Hi Pisces,  Welcome to the forum,  you have a lot of the same symptoms my 4 year old has.  She has sjs and is always having sinus infections.  I am curious what is a sinus flush.  Also do you have headaches.  My little one is constantly complaining of headaches.     

[Pisces24]

As to sinus flushes- It is call NeilMed sinus rinse available in most pharmacies, etc. It is an 8 ounce plastic bottle with a black top w/a hole in it. You put in distilled water and about 1 tsp (follow directions) of sea salt - that is NON-iodized sale.  Basically you squirt the water in your nose - I do twice a day.  My immunologist was really surprised I had never used it before.  I have to say it has helped me. I didn't get a bad sinus infection this year - the kind where you feel you were drug behind a truck on a gravel road    I would definitely ask your doctor about it for your daughter. It is inexpensive, does help and it isn't that "yucky" to do. Good Luck.

No headaches except with sinus infections which I get easily. The teeth worry me as I take good care of them to no avail. My mouth is full of metal from all the cavaties filled within the last say 10 yrs. No fatigue or joint pain nor neuropathy. Just basically real "wonky" blood work and slightly swollen lymph nodes.

BYW: Can anyone tell me when the USA chat is? I live in the Midwest. Thanks!

[Linda196]

The schedule and instructions for chat are at : http://www.sjogrensworld.org/chats.htm

Just scroll to the schedule, find your time zone, and you'll find the listing for all the chats. They aren't really organized by place, we simply refer to the Wednesday one as the Euro- or UK chat because it's the only one that doesn't happen in the middle of the night for our friends across the Atlantic.

[jonnell]

Jennas teeth are very bad she is only 4  and had all of her front ones pulled and has metal and caps on the rest.  Her dentist told us to use the mouth rinses they have with her in between brushing.  I use one called Aqua rinse it is for dry mouth. 

[dwbreadbaker]

Good Evening and Welcome,

I am responding to the issue of the cavity problems.  I have experienced the rotten teeth (usually abscessed) issue over the past 10 years as well and was recently diagnosed with Sjs.  Last year, a relative told me about using Oregano oil capsules to prevent tooth infections.  I'm happy to say that I have actually gone for over a year without the need for a root canal.  As with anything else, you should check with your doctor before starting any new supplement.

Debbie