New with questions about how to deal with specialists

[sleepmonkey]

On Thursday, I came across Sjogren's on the Merck Manual website by accident when looking up symptoms and eventually ended up here. I also borrowed 3 books from the library about SS.

I've just had back-to-back viral infections which amplified the symptoms, and I've been to my doc and walk-in clinic several times in the past 3 weeks. Last week I was so physically exhausted (not sleepy) that I went to bed with fever and chills, and stayed home for about 6 days - highly unusual for me.

Have severe dry eye, optometrist detected it about 4 years ago after complaints, and since June have been taking dry eye supplements (fish oil) but super concentrated and high grade, prescribed by the optometrist. That helped almost immediately but I still need to take drops throughout the day even if I don't feel I need them or I'll have problems. Even with drops I still feel like there is something in my eyes, and often wake up with sore eyes.

I do have exhaustion daily from mid-back pain and yesterday figured out I could rest on a camp cot for 10 min every 2 hours (more or less) and that would keep this at bay so I am not totally exhausted when I get home (I can only work about 4 hrs a day). Thank goodness I have an understanding boss (me).

I won't go on with more symptoms, but there are enough in an otherwise healthy energetic person to question it.

Last visit with the doc I asked about Sjogren's, he didn't know much about it, thought it was a joint issue, so I gave him the printout from Merck which I could barely understand, said I had a lot of the symptoms, and is it a possibility? My doc is extremely difficult to talk to (1 issue per visit) and I also have difficulty communicating in a few words (hence long post).

Will be referred to rheumatologist, ENT, had more bloodwork and chest X-ray. Follow up with my doc in 3 weeks.

I also have asthma (dry cough), narcolepsy, probable ADHD or exec function disorder (diagnosis halted to investigate sleep disorder) and likely learning disorder.

Narcolepsy finally diagnosed last year after mis-diagnosis 20 yrs ago. Hoping not to wait 20 yrs for diagnosis if this is SS or something else.

I'm here to learn more about what I should be asking, how to prepare for appointments, and what things people have done to manage/minimize symptoms specific to SS. Would appreciate any help. Thanks.

[Joe S.]

Welcome Sleepmonkey. Narcolepsy is an AI disease. AI diseases bring their friends (other AI diseases). I use alternative therapies with suggestions from Doctors. A rheumy is your next step.

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.

Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.

[slccom]

You likely have Sjogren's affecting your lungs as well. That dry cough can indicate other things going on as well. I bet you don't suddenly breath better with albuterol; you probably just stop or reduce coughing.

Ditto on sorry/glad you found us. I have had Sjogren's all my life, and didn't have real significant diagnostic symptoms until I hit about 50 when my eyes went really dry. Luckily, we live in a world of true miracles, and we have medications that are helpful in preventing the really crippling effects of it and the related autoimmune diseases that love to come along for the ride.

Please, please, please keep in mind that the people on this board, for the most part, are much more ill than you are likely to ever be. I believe that most people with Sjogren's are never diagnosed because either they can't find someone competent or don't have the "right" blood results. Also because they never get sick enough that even a doctor can tell!

Besides tracking your symptoms, you should also track the medications and supplements that you take, their doses and how effective they are. Set up a spreadsheet or something, and after you make an entry, e-mail it to yourself (assuming that you keep sent e-mails) in case your hard drive crashes. Do the same with diet changes.

Since you are having symptoms now, especially joint pain, I would ask about getting on Plaquinel ASAP. It is really cheap in the generic form. Always tell your dentist that you have Sjogren's. The eye drops you use must not contain benzalkonium chloride as a preservative, because it will damage your cornea. You need to have an ophthalmologist, too. Tell her/him you'll be on plaquinel and you need a baseline visual field test. (Actually, if they don't tell YOU to get a baseline visual field test, thank him/her politely, leave and find someone else.)

Beware of the nocebo effect. This is where people who are given placebos but told to expect certain side effects, and they then develop those side effects. My advice is to take the medication, take it with optimism, and if something that distresses you develops, only then look up the side effects. The human mind is an amazing thing, and the power of suggestion even more so. Even worse, many people are more afraid of the medications than they are the disease. This is very dangerous to your long term health and functioning.

Sharon

[Meld256]

Hi Sleepmonkey,

Let me also welcome you to the forum!  

I hate to hear the problems that you're having, but I'm glad that you've found us.  There is loads of information here and some very friendly, helpful people.

In regard to your questions, first of all, it sounds to be positive to visit a rheumatologist and an ENT.  A rheumatologist is one of the primary care providers many of us see, and many also see an ENT. 
I suppose one suggestion I would make is to take a short list (a summary) of your symptoms. You may want to ask how they would treat your symptoms, whether or not you get a definite diagnosis.   I can take some time and patience to have doctors learn more about what's going on. 

There are many different routes each of us utilize to help symptoms.  It depends a bit on what the most concerning problems are; some of us have mostly dry eyes and mouth, some have more joint pain, etc.  There are medications that help many of us quite a bit, and some people prefer to take a more natural approach. 

I would encourage you to read through our site-there are many topics.  I realize there is so much to learn, but please take your time and be patient with yourself.  I know because when I first learned of this, I overwhelmed myself with information.
Please come here and ask anything.  We will be happy to help as much as possible.

Again, welcome.   We look forward hearing more from you.
Melinda

[A66eyroad]

It's funny (and by funny I mean sad) how often I've read on this forum about someone who diagnosed her/himself. I did, too.

So Sleepmonkey, I love your screen name! It seems to me that you're feeling bad enough that you proactively did your own digging and figured out what's wrong! How smart of you! Now you've got to figure out whether you want to continue going to a doctor who won't let you be a part of your own treatment, or if you want to fire him and find someone else.

If it were me, I would have to confront the doctor, saying something like this, "I understand that you have limited time to spend with each patient, but it's important to me to be proactive and involved in the treatment process. If this is not something that you are comfortable with, please let me know now so that I can find another doctor."

Good luck! Remember --- you're PAYING for his expertise. It's your money; if you're not being treated the way you want to be treated, fire him!   

[A66eyroad]

How timely! Here's what I read on NBC.com just now:

http://www.msnbc.msn.com/id/48942726/ns/health-mens_health/#

[sleepmonkey]

Thanks for the replies. I was confused by the mumps scarf thingy but eventually found a thread explaining it, I have a polyester ski neck tube so I tried that overnight along wih a scarf tied over my ears (the latter fell off during the night). Woke up feeling some nasal congestion, even with dry nose. Weird!

As for the doc, you can't switch doctors up here since there is a shortage, no matter how bad your doc is. So the only approach is to work with the doc, which is, I think, the best approach anyway. I have to allow the doc to do his thing, but at the same time, I need to be able to get across what's going on. I ended up writing up a list of symptoms I'd had this week and just gave it to the doc. I would never have mentioned severe dry eye to my doc if I hadn't accidentally come across Sjogren's - of course it jumped out at me.

I got a message today to call the doc's office, which could mean a few things, not going to speculate and will call in the morning.

A 4 week sore throat is not normal, is it? What color should my inner nasal wall be (far back, not the part with hairs)? Mine is bright red.

[slccom]

Chronic sore throat is characteristic of chronic fatigue syndrome, too.

Good luck with your doctor. We will be waiting for an update!
Sharon

[sleepmonkey]

Thanks, Sharon. I will post an update. My first referral appointment is with an ENT in a week. Going to work on a symptom list to start documenting, describing & tracking symptoms.

[slccom]

Good! Be sure to include things that are "normal" for you but you realize that others don't do. For example, all my life I have had to drink something at least every few bites of food. Who knew that wasn't normal? I always If that the folks who eat their whole meal and then have a drink are the weird ones!

If you wonder if something is part of Sjogren's, ask us. And post your list -- it will help others as well.

Sharon

[SjoDry]

SleepMonkey,

You mentioned Executive Function D/O.  Having spent many years working with the LD/ADHD population, there are SJS symptoms that can look a lot like Exec. Function Disorder.
My significant memory,  processing issues and inability to stay focused or on task from Sjogrens could very easily be mis-diagnosed as LD/ADHD. There are many overlapping symptoms that
can resemble one Dx, but be caused by another. Many of the symptoms that you mention are also experienced by folks with Sjogrens.

And 1 issue per visit.....NOT! I would not tolerate a physician that did not let me present the whole picture for a complete diagnosis :-0

Take Care.
SjoDry