Newly Diagnosed and don't know how to feel...

[dbaratta]

Hi:  Just wanted to try to reassure you that it truly is a blow when you first find out -- but many of of have had quite severe symptoms for years (and not to mention, every specialist in the world) so that when we finally find a doctor who can actually put the pieces together, it is actually a relief.  Better to know something than to imagine (or not) that all doctors think you're neurotic! I am sero negative and went through a failed lip biopsy and then a 2nd which was positive.  I agree with the others that you should question why the doc wants it.  I have permanent nerve damage which was a result of an unqualified surgeon.  If you need to go, call around and find an Ear, Nose and Throat doctor and definitely ask how many they've done -- it really isn't a big deal and is done in the office and when done right, doesn't cause any other problems.   I'm sorry it is hitting you so young.  I was 62 when an infectious disease doctor (during my 4th visit)  said "I know what this is".  Music to my ears.  The rest is history.  I am now almost 65, managing pretty well.  Have developed CNS, neuropathy and radiculopathy.  I also have the face numbness, the horrible cramps in my legs which hit my entire leg, right or left, but which is not a cramp at all but a pinched nerve + carpal tunnel both hands, etc.  Just got a referral to Johns Hopkins for neurological work up because of numbness, pain, loss of muscle mass, weakness, etc.  They will be seeing me.  I also had a 50 lb. weight loss about 6 years ago for "no apparent reason" but am glad that the weight is gone so there was a slight silver lining to this.  I want you to know that everything that happened to you happened to me as well and that I'm managing quite well at this moment.  The absolutely most helpful book I bought was "The Sjogren's Survival Guide" - easy to understand-my bible! Best of luck to you.  There's safety in numbers - and education abounds here.  We're all in this together.  Diane   

[penguin803]

I'm so glad I found ya'll.  I was diagnosed about a year ago and had times when I thought I was crazy! But I now realize a lot of us have the same challenges. Yes, there are many conditions that are worse, but that doesn't mean what we are dealing with is any less troubling to us. When someone says, "Ok, you feel this way, but..." it sometimes makes me think that I'm not entitled to my feelings because this disease isn't more catastrophic. And it was reassuring to know that others also had flare ups, when symptoms were worse. So, I just wanted to say thanks for all the good advice ya'll have shared and all the encouragement!

[Chickpea]

Hi Penguin

It's good to hear that you've found a home/nest (?) here with us.  Maybe you'd like to post a message and tell us about your journey to a diagnosis, what your symptoms are, and a little bit about yourself?

Looking forward to getting to know you better.

Take care - Chickpea

[Scottietottie]

Hi Penguin 

Welcome to Sjogren's world. It's a good place to share concerns and everyone knows what you're talking about!

Take care - Scottie 

[Net]

Hi Musicismylife19 and Penquin too: Glad you two found this site. Diagnosis can be scarey and very uniformative. My Rheum. sure didn't tell me much. I was computerless at the time and browsed a little on my sisters in the medical web sites. Finally I bought a sjogrens book but at times I felt it scared you with all the things that "could happen". Then last yr I finally got 'my" 1st computer and in between the kids on it I scanned through this site. When I finally logged in it was indescribable the relief I felt to read about others with similar problems. So I hope you find this site and the great people on it as helpful and understanding as I have. Man I think sometimes "we" all know more than our Docs that's for sure! Take care and hang in there. And as for your boyfriends comments.... sometimes they need to be reminded that today's a bad flare and that sjogrens is and autoimmune disorder and will come and go alot with symptoms ----a little compassion is always nice right?  And if you just started some meds. , give it time . Lately my new concept is to listen to my body too and rest and kick back when my body says "too much !!'. Seems to be helping not to push myself to the limit so much. Sorry for the chattiness. Take care---Net

[wednesday mc haggis]

Penguin
welcome to the furm.

Yup i think weve all went through thinking we were mad, many of us were made to feel that way by medical staff too, so your not alone in that!

Glad you found us too, and get the emotional support you need, yup time times and good times for so many, flar eups and settling down as well, its quite a journey :-s

T x

[Butterfly]

Hi Musicismylife19. Finding a really good doctor who listens to you and has knowledge of sjogren's syndrome is the first key to learning to live life with sjogren's (and any other chronic illness). Many of us are still looking for that doctor. I suggest you read as much as possible on sjogren's. It's also helpful to join a local support group (in addition to the internet support group here) if you can find one in your area. The information as support you receive from these groups will be invaluable in your new journey. We often have to help educate our doctors about sjogren's. If you start plaquenil you will need an eye doctor to assess your eye status every 6 months to make sure you don't experience negative effects on the eyes. A dermatologist will be important if you have skin manifestations. Other specialists may be needed depending on what path your sjogren's takes. I have been diagnosed with sjogren's for about 7 years. The first 5 weren't too bad-I only had dry eyes, dry mouth, dry skin-including what I call the sjogren's rash. I have several other autoimmune diseases as most of us do. I was able to work full time until 8 months ago. I am either experiencing a flare or a progression on my disease. My symptoms now include brain fog and extreme chronic fatigue which have made it impossible to work. I hope to one day return to the job I loved so much. I have been lucky to find great eye doctor, great dermatologist, great obgyn which I use as my primary. I am still looking for a quality rheumy that has the knowledge needed to treat me and the compassion in which to deliver my care. Each of us morn the loss of what used to be our "normal" life in different ways. Many of us go thru this process as our "normal" changes and evolves. It is an important part of accepting life's changes. I have found that my family and friends mean well but don't or can't really understand what I'm going thru. I have found this site of friends and my sjogren's support group friends have a true understanding of what I'm dealing with. It's comforting to know that others share your experience (even though I wish no one else had this disease). My symptoms vary day to day season to season. In the winter when it's so drying my symptoms are harder to deal with-skins dryer, mouth and nose are dryer, joints are achier, etc. Humidifiers are a godsend as is plaquenil and saligen for me. I hope you find the answers and support you need and deserve. Take care

[Billydude]

Yes,  you definately need to learn all you can about this disease.  I'm finding explanations to things that my doctors aren't able to figure out.   I really can't blame them.  They need to focus on so many different diseases and we are at the liberty to become experts in this one field.   Years ago I owned a few antiques shops and I can compare it to that.  There are so many different kinds of antiques and as a antiques dealer it was impossible to become an expert on every different type.  People expected me to know about and be able to appraise everything.  Its impossible!    So,  same is true with Sjogrens Disease.  You'll be better equipped if you learn all you can about it.
It was always a mystery to me why many of us experience head sweats.  My rhumy didn't understand either but I've just found the answer on my own and feel relieved that I can explain it now. 
So.....read read read!!!!!
Steve

[jpd54]

Hey!   I am new to this forum, too.  For years my husband thought I was falling apart - I had strange symptoms, none occuring at the same time.  Nothing is worse than the unknown.  Now with a diagnosis at least we can figure out how to deal with it.  Everything makes sense now.   Just remember to laugh

jpd54

[Dolly Dimples]

  A trio of welcomes to Music is my life.. Penquin... & last but not least JPD.

  You will find tears, depression, pain and frustration here,  but you will also
        find lots of advice , comfort and sympathy here with us..

         Sorry you  all had to find your way here, due to this affliction, so bide a wee while!
                                  Cheers Dolly.
       

[2crazyboys]

I was just diagnosed and I thank God I am not crazy.  My husband was getting frustrated of seeing me tired.  He thought I was not as sick as I really was.  I was always sick with sinus infections, so much so I had my tonsils out.  That did not help.  I was out sick from my job too much.  I have constipation IBS, diagnosed since I was 24 years old.  If  I don't take my Amitiza I have major gas pain.  I found out I am allergic to drugs that I was not before.  My eyes and my salivary glands would swell up without reason.  They thought I have allergies.  My sed rate was not high enough to get diagnosed so my rheumatologist sent me to get a lip biopsy and it came back positive.  Now I know I am not  crazy and reading the info on SJS, I feel vindicated.  I now know and I believe I have had this for many years.  I am reading everything I can and I thank you for being here.

[penguin803]

Thanks so much for all your wonderful support. I was diagonsed last year, but that was after living with all these strange symptoms for a long time. My symptoms are not severe - the dryness, skin rashes, extreme fatigue and achiness and the irritation in my mouth and salivary glands. I'm whiny right now because they are all acting up together  But this will pass. Once again, it's so encouraging to be a part of this group and hear such good advice and support.  I'm still reading and learning and hope I will be an encouragement, too.  Just reading through some new posts and seeing other's symptoms, I can say, "Yep, had that too!"  I was fortunate to have a wonderful primary care doctor who could piece all this together rather quickly. My rheumatologist (sp?) was pretty good, too.  He did a bunch of x-rays to see if any organs had been affected and none had.  Just had the osteo-arthritis, which I think most of us will get as we age.  But I'm determined not to let this keep me down.  Like others have said, I'll listen more closely to my body and when it says to take a time out and rest, I'll do it.  I have a good friend at work who has lupus. She says that our problem is when people look at us, we look fine - no huge, obvious signs of what we're feeling on the inside.  And I think I will adopt my late father's attiutde.  He had cancer and was going through some rough chemo.  We were talking one day, during a particularly rough patch, and he told me that when anyone asks him how he's doing, he said, "Great!" thinking that if he said it enough, he'd convince himself! So, today --- I feel Great! 

[TerriJ]

Hi Music,

I can only imagine how difficult this must be for you considering your focus in life.  Sometimes it does feel as though this disease is like a thief in the night...  Somehow I'm always thinking there must be a silver lining, but there are times when you end up wondering what happened to the path you were on.  I'm sorry about your family and boyfriend not fully understanding this situation.  That makes it so much more difficult.  I do have good support from my husband thankfully.  It's funny though when we run into friends who know I haven't been well they say "gosh, you look great!"  It always seems kind of shocking to me because I feel like what I'm going through is huge how could anyone miss it!! lol

I was diagnosed with SJS and fibro about 6 mo. or so ago.  I have very dry eyes, but my mouth is not dry at all.  It started with fatigue and an odd dizzy feeling (like my eyes/body couldn't find where level is.) I wanted to sit down a lot.  The doctor did all kinds of tests and didn't find anything, including a brain MRI.   About a year later I started having numbness on the side of my mouth and fasciculations.  I was really freaked out.  I had an EMG that was fine except fasciculations were visible.  I was having some thyroid issues and my endocrinologist took me off of my Synthroid for a week.  I started having muscle pain and it has never completely gone away. Neither have the fasciculations.  I ended up with a very stiff neck, front and back.  The physical therapist says my muscles are like bricks in my neck and back.  Also has an MRI of my cervical spine that was ok, but the PT said often times those MRI's don't show issues with spinal alignment.  I finally saw another neuro who asked if I had ever heard of SJS.  Of course I had not.  She did some rheumatological labs and I had a positive ANA, Anti Ro of 448 and a Schirmer's test that showed very dry eyes (don't know the number.)  I was referred to a rheumatologist at a nearby teaching hospital.  I asked about a lip biopsy and he said even if it was negative he would still give me the same diagnosis of fibro and SJS

Best way to do this I guess is a list of symptoms for me:

Burning and ringing in ears
numbness in big toe, mouth and teeth
vibrating sensation and/or tingling in feet or hands
odd sensations in face
over exaggerated startle response (rapid tingling that goes up my neck and face)
cognitive issues
muscle pain and some decreased strength
some loss of muscle mass
jaw is not aligned properly
jaw joint very tight
difficulty talking for long periods (once again mouth is not dry)
fatigue
a couple of widespread rashes
dry eyes
odd feeling like my muscles are alive (poor description I know) it isn't really spasms though
Spasms in esophagus

I'm probably missing something, but that's about all I can remember right now.  I take a low dose of Tramadol for pain and a low dose of Provigil for fatigue and cognitive issues.  These meds help me function for sure.  I use various alernative supplements, but don't know if they really help.  Acupuncture has been very helpful as is the physical therapy.

I have other autoimmune diseases as well.  type 1 diabetes, pernicious anemia, psoriasis and now SJS.  The doctors don't feel my issues stem from my diabetes because of the onset and all of the other symptoms added together.  I am in very good control.  I think that's it.  I also had my vocal chord cut when I had my thyroid removed at age 7.  I've noticed even more difficulty with my voice now and speaking.  I can no longer yell and singing it tough, so I can only imagine what you must be going through.

I hope you'll keep coming back to visit the site.  The people here are very nice and it does help to feel less alone.

Terri