Diagnosed and ditched!

[IllnDontWantAPill]

Hi all,

I'm new here to the forum. I was DX'ed with SS two days before Thanksgiving. I don't know that much about it except the way it's portrayed is inaccurate. All you see is dry eyes, dry nose, dry mouth etc, everywhere you look. My Rheumatologist told me to go to Mayo's website to inform myself. Really? You're my doctor, can't YOU inform me? I saw her two times. The first time she laughed at my disability (I also have Tourette Syndrome) and I wanted to knock her teeth down her throat! I've had Tourette's for 24 years and never once, has a doctor laughed at me, until I met her. I put her in her place and that was that. The normal reaction with all my stress and getting the run around from MD's would have been to cuss her out, scream at her, make a grand EXIT with both middle fingers in the air! But I didn't. I'm not a bad or mean person but when you deal with so much and then a doctor laughs at your disability, it makes you a little psycho So anyway I saw her a second time when she put me on Plaquenil. It worked good at first for the morning stiffness, joint aches, skin rashes, and itching fits etc, but then I went downhill fast. My mom was having to put my socks and shoes on because I was so stiff I couldn't bend over without feeling like I was going to pull my lower back out.

So basically I know hardly anything about the disorder and I have questions I want answered badly, but she banned/discharged me from the practice (I know, she makes fun of me and I get banned) so I have nowhere to turn. My PCP, Endo, Rheumatologist & Cardiologist were all under one roof in the same practice. My PCP made the decision to ban me (for no reason, refused to give an explanation) and I feel lost. I AM lost. I lost 4 doctors.

My SSA came back flagged at 7.7 when the range is 0.0-0.9 - so my questions are, is your life expectancy shortened by this disorder? What kinds of symptoms do you guys have? Now they think I have MS too and I'm being worked up for that AGAIN. I just have so many questions but I'm moving soon from one end of the U.S. to the other. I'm not investing time and getting comfortable and established with someone when I'm leaving on May 3rd.

Any feedback would be appreciated. Don't hold back. Tell me ALL I need to know and what symptoms you deal with. Even the doctor that DX'ed me with Sjogren's said all my problems (symptoms) are not from SS and something else is going on. Maybe that something else is MS? I don't have RA, or SLE as I was tested for that and I'm trying to weed out what symptoms are SS, and what symptoms are from the other undiagnosed disorder.

Thank you!

[CMNK12]

Wow, Sorry for your trouble. First, sjogrens is known as the great imitator. It has many characteristics of many other illnesses. It , in fact, is not just dry eyes and mouth for many people. Check out google scholar , do a search with just the term sjogrens. Read the articles there. Then type in some of your symptoms plus the term sjogrens and see what you get.

  Also, please make sure to get your medical records from that practice with your labwork before you move. This will be helpful to you. Keep a journal of your symptoms each day, how long they last, what helps and what makes it worse.
When you do get a new heathcare team, keep everything calm, cool and clear stated. I am so sorry that anyone would laugh at your disability. Maybe take along an advocate with you to appointments? A friend, parent? I try to take someone with me because I often forget certain things esp when I get news I did not want , or get a new med. Sounds like you needed a new doc anyway if she did not want to talk to you. Just sorry it had to feel so bad.
Welcome to the group.   CK

[quietdynamics]

In case you missed the links with information:
http://www.sjogrensworld.org/links.htm

Plaquinel can take 6 months for full benefits. And yes the symptoms of SJS will change day to day or week to week..so you have to learn your triggers and how to manage yourself, do things differently.

Some Drs, unfortunately do not look beyond 'sicca symptoms', so finding a SJS informed Rheum can be a challenge. They are out there.
The Mayo Clinic site would not have been on my top 10 list of informative sites. My Rheum sent me here.
And for those of us here that have systemic symptoms, some will be fairly common, others unique...some of us have other overlapping Dx.

So in reading here do not ever assume a symptom is one you will present.

Since you are moving you can use the time to start researching for a new Dr.
When I moved I asked the local pharmacy if they could give me the name of a Dr. they were impressed with or had heard good reports from patients.

[finallyadx]

So sorry to hear about your lack of professional healthcare interactions and care you are in much need of and deserve.  I go to the Lahey Clinic in Mass and LOVE them.  The rheumys there are very knowledgeable about SS and they treat symptoms and the disease.   They treat you like a person with an illness that deserves respect and empathy as well as professional healthcare.

I was sick for some time and saw three different drs outside of Lahey before being referred to Lahey - it was the best decision of my life.  I have had symptoms ranging from dizziness, neuropathy (face, jaw, legs, arms, hands, feet), extreme, bone crushing fatigue, pain in my face and jaw, chronic sinus infections, dental issues, headaches, shakiness and many other symptoms that come and go especially when I am getting another illness such as the flu, cold or even my period.  Do not let anyone "phoo phoo" the way you feel - you know your body best and how it felt at one point when you felt "normal" compared to what you feel now.  If you have to, make a list of the symptoms, keep a journal of when they come and go, be certain to get your bloodwork results from the MAYO Clinic so that the new dr has them to reference.  I have been on plaquenil for abou two months now and am noticing some differences.  I have just gotten really sick this past week though - with either bronchitis or pneumonia (just came off a taper from prednisone - here this happens to folks often)...so all of my ss symptoms have returned full force while I am sick to remind me that they are here and not going anywhere anytime soon.

Keep your head up, be an advocate for yourself and you will find a rheumy who will understand you and treat you with respect and dignity.

Good luck.

[Momedic]

Does anyone know of a Rheumy in or near Watertown, NY? The one I have now does not believe that I have SJS! Even tho the blood results show it and the Eye Doc did the tests and shows severe dry eyes!  I need a new Rheumy!!  I really do not like this guy!!

[Joe S.]

I hope this helps you to help yourself.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Tharrell]

Finallydx: wow, youre story is almost 100% mine! My rheumy finally gave me the sicca dx, but refuses to say sjogren's because the only positive test I have is ss b. I have every single symptom you  described. The hardest one to explain is the sensation in my brain including the dizzyness that's not dizzyness, doctors just look at me and don't understand. What makes me want to cry, if I could, is that in my rheumys bio it says he is interested in SLE and sjogrens. His very firm and unbudgable believe is that you can ssa without b, but NEVER b with out a! I pointed out that it may be rare, but it still can happen and he just waves me off! Argh!

[SjoGirl]

Suggest looking at information, including the video on the Sjogren's Foundation web site. You will find Sjogren's does not typically affect life expectancy. That said, the symptoms and suffering have led some to say they would trade years for better quality of life (also found in a study by the foundation).

It is very hard to deal with this disease. Hang in there, it is possible to find some relief if you follow some of the advice given such as figuring out you triggers.

[finallyadx]

Sorry Tharrell that you are getting nowhere with your rheumy...heard similar story on another posting here...I would do what sjogirl suggested and get some articles and reading and bring it into the rheumy where there is support for those that test + for SSB but not SSA - there are rheumys who will treat with symptoms and little to no + bloodwork, but you have to find one.  I am sorry that you are having such difficulty, it is so very frustrating when you know there is something wrong with you and yet you cannot receive the treatment that you need and deserve to try to "move on" with a somewhat normal life, if this is even possible with sjogrens.  I  have yet to "feel normal" since being diagnosed.  The plaquenil has helped some as did the prednisone burst I had, but now I have come down with either bronchitis or pneumonia (going to drs today for dx) since being off prednisone and feel horrible again - same neuropathy back as before, dizzyness, "brain fog", etc. as before.  It is so frustrating.  Sometimes the bloodwork is not positive for weeks/months even years but the symptoms are there and sometimes the bloodwork is "off" but not quite telling.

Maybe you could even "interview" rheumy's to see if anyone in your area treats based on hx (sinus infections, dental issues, dry eyes, mouth, neuropathy, dizzyness, etc.) and a positive SSB.  Many times if you can get the dr to all you back before you go in they will tell you if/how they would treat you. 

I wish you luck - please hang in there and be persistent.

[slccom]

You should report this "doctor" to an independent living center, or the EEOC, or look for an attorney. This is a blatant ADA violation and this woman needs to be educated. If the education is expensive, for her, so much the better! Is there an ADA committee where you live?

Do this once you have all your records, of course!

Her actions reflect on her. NOT you!
Hugs, Sharon

[slccom]

It is the Department of Justice for the ADA. If it is an employment issue, you want the EEOC.

I realized that last night/this morning about 4 AM...
Sharon

[IllnDontWantAPill]

Hi everyone,
Thanks so much for the feedback and sorry about the delay in responding! Life is so busy. I don't want to seem non-compliant to your suggestions but I pretty much do and/or have done, all the above. My mom was with me at the appt where the doctor laughed. She's always there because I want her there. Doctors see her as an overbearing mother, but I bring her along to understand what these "professionals" are saying due to my cognitive issues. When I go alone and leave and mom asks me "what did he/she say?" My usual response is, I don't know and/or..."I don't know, something about (insert issue here) and (insert another partially understood issue here) and that's it." That's when we adopted the idea of her coming to my appts. I have ALL my records. Thanks for that advice!! It's funny because every record was there, EXCEPT...the notes where Dr. Ilaughatdisabilities diagnosed me with SS! I thought, oh how coincidental! The doctor that laughed at me is withholding her notes (because I mentioned the words, lawyer, ADA, discrimination, abandonment etc) then all the sudden, it was no problem to get those printed out for me. Yeah, I guess there isn't a problem! I have to admit I'm in the dark about sicca and SJS?? My doctor laughed at me, ordered some blood work, followed up for 7? minutes of which 5 was spent with her iPhone ringing off the hook in her lab coat. She QUICKLY went over the importance of oral hygiene, yearly eye exams for some eye condition, and my increased risk for Lymphoma which she likes to keep tabs on by doing an SPEP every 6 months.

Since my last post, I found out I have Optic Neuritis which many probably know is an MS thing. I have my third spinal tap on April 8th (keep your fingers crossed it shows something IF I have MS..) I know that sounds weird but I am not the kind of person who likes to live in denial. I want to know what I have, accept it, face it head on and deal with the best I can.

As far as the doctor who laughed at me, I'm going to pursue it, but as I've seen before, it gets me nowhere. You guys would be appalled at the stuff that has happened to me. From being threatened by a doctor, to a doctor threatening to shove a catheter up me because I just needed some water to give a urine sample, to being cussed out by a doctor on the phone, to being smacked on the shoulder by a doctor etc. For whoever said about the verbal outbursts with the Tourette's...whoever had a friend with it, I have a lot of those along with motor tics.

My symptoms range from severe sinus pain like someone wacked me in the face with a bat, to chest pain and sinus pain simultaneously induced by talking, joint pain, muscle spasms, fasciculations, heat intolerance, cold intolerance, burning, stabbing, itching, cobweb, crawling, biting, cold/wet sensations, parathesia, nausea, constipation, 110 lb weight loss in a short time, right foot drop, bone pain, tones in my ear, recurring boils that are always MRSA, dry eyes, dry lips, insomnia, agitation, burning muscles, trouble climbing stairs, weak and shaky, cognitive issues, short term memory problems, etc

Can someone explain what SJS is? What is sicca? Does SS have relapses and remittance like MS does? Are there good periods and bad periods/flare-ups? I know that is common with MS and I also know I used to have good and bad times, now it's bad 24/7 and I keep going downhill without any break. It makes me worry about ALS and I know I'm young and my doctors say no no no no no can't happen, nope nope, no way no way...whatever! I had brain surgery and my chemistry is different. Doctors have told me that. I'm not your typical patient. Most 28 year olds don't have Interstitial Cystitis, Sjogren's, Tourette's, B12, Potassium & Vitamin D deficiencies, hypercalcemia (elevated blood calcium..which can be indicative of cancer) severe reflux (per radiologist's wording) a brain hemorrhage, degenerative disc disease, dementia, bulging, protruding discs on every level of the C, T & L spine etc! Doctors ALWAYS want to go by what's common and lab ranges. You can have thyroid cancer and have all labs be normal, including thyroid cancer tumor markers! I don't know if Illinois will bring me any luck as I moved to Las Vegas FROM Illinois and now I'm going back to IL. Though taking everything into consideration I guess IL may have been better overall. My motto is, if the test could possibly diagnose me, tell me where, when, and get me scheduled!!

Sorry for rambling, thanks for listening, thanks for all the advice, you guys are awesome since my 4 doctors turned their backs on me. Who needs doctors! The best information is from people who LIVE IT daily. Not some textbook following fool who can't think outside the box! Thanks so much once again for all the help, info, the warm welcome and apologies on that doctors behalf.

Thanks so much!

Gary