So, I just got home from my new rheumatologist appointment. Still no diagnosis and no willing to check into Sjogren's any further since my Schirmer's test and Antibodies don't support it. They've already run as many tests as they can at this point short of a lip biopsy (which they weren't willing to run without the Shirmer's test to support it).
One thing she did mention was that they see the flare-ups lasting months, so my bouts of joint pain didn't fit the pattern of Sjogren's, RA, etc. Do most of you have your flareups for months on end? Mine only last a week or less (except for a time in November which was a month), then calm down with just feeling achy. With my memory/concentration problems, she thought it may be all of the stress of worrying about medical stuff, etc. (ie. depression).
On the car ride home, I pretty much decided that I need a vacation from doctors right now. If my symptoms are in fact related to some type of depression, I don't see the point of seeing a psychiatrist since I'm not willing to take any antidepressants. I am very sensitive to all medications and just don't want to deal with the side effects of those. My solution is to work on taking care of myself. Incorporate exercise, eat better, do at least one fun thing per day and spend more time playing with my kids rather than "taking care" of them. Sometimes you just have to grab the nerf gun and go to town rather than doing the supper dishes. I have my Johns Hopkins appointment in November, so I'm going to aim to get myself de-stressed this summer and see if that solves things.
Thoughts?
Thanks,
Susan
I like it... I had to take off a long time from dr's and when my dentist, eye dr and gyn all said something was wrong within 2 months of each other, tried again and bingo - here I am... :) Sending hugs! You have a great attitude!
I think we are all different & need different things. If you need time off & have an appointment in November than that may be right for you.
I needed something different (diff. situation though). I needed to find compassionate doctors that I felt really cared about my health. When we do that it is a positive affirmation that is sent through our mind/body that we can heal. I found that and I hope you do too.
Good luck in whatever you choose!
I would really love a Vacation from Sjogrens Syndrome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My new rheumy was the opposite. Even though my eye test don't support the diagnosis (I scored a 10 on both eyes), blood tests are negative even ANA, she says that I have enough symptoms that is require a lip biopsy to make a diagnosis. My symptoms are dry eyes, itching skin, joint pain that comes and goes and mouth problems. I still have saliva but my mouth is causing me problems.
I with you topping21. I would really love a permenant vacation from SJS. I once thought about taking a vacation from doctors after I learned that my cardiologist had told me a lie to keep me coming back to him. He told me that I had mitral valve prolapse when all I had was high blood pressure. I got upset with him because of something else and never went back. Years later I had my GP sent me to another cardiologist because of this and he couldn't find anything at all wrong. I just about quit seeing doctors all together. That is except my Uro because of my interstim.
Yes if we didn't have the sjogrens we wouldn't need the doctors,
I know what you mean I just get plain feed up with having to go to the doctors I really do dread finding a new symptom because that means more tests and more doctors and it feels like your on a merry go round I am at a stage with anything new I don't want to know and am in denial with.
Cheryl
Yes, I saw the neurologist (Dr. on call during a rare ER visit). He has addressed the Migraines, and helped me with Insomnia.
Next, we will address numbness/tingling in outer fingers and toes. He said we can do tests. Tinnitus...not so promising. White noise from a box fan helps.
I asked can I take a break? I have an appt in 2 months (had been once a month) and he told me to call anytime if I need him.
vtmommy~ have they checked you for lupus or anything else? Are you willing to see another rheumy? Sometimes we have to go through a few of the not so knowledgeable ones until we find one that knows what they are talking about. They can take the same results and each interpret them differently. I had my first say every test was negative, but my second said those same tests were positive for both sjs and lupus. I'm on my second rheumy (who is a keeper) but my first one said I was just depressed (the go-to phrase when they interpret the test results to be negative). If I had listened to her, I'd be in therapy instead of actually getting real help. Not to say I'm not depressed, but the root of the problem is what needs to be dealt with. Band aid solutions are only temporary.
If you think depression might be a possibility, try the following exercise. I learned it a long time ago and just remembered it when I read your post. Anyone can benefit from it. It's simple. You pick three things to compliment yourself and/or your life and look at yourself in the morning and tell yourself them CONVINCINGLY. Pick 3 new things every day. The purpose is to help you focus on the often overlooked good things, and think positive. It also helps to build your self esteem. It can be anything from "my eyes look pretty today and more awake" to "I'm thankful for the change in the weather so I can enjoy hearing the birds twitter" or anything else positive.
And oh yes, a vacation from doctors would be great! Especially the ones that act like YOU are wasting THEIR time ::)
I have symptoms only and my rheumy hasn't labeled me officially but she it wouldn't matter, she treats my symptoms.
I would try anither rheumy. Nobody understands until they themselves have suffered like what Sjogren's can do to you.
Even better is keeping a gratitude journal. Every day, write down three good things about yourself and your life. That is really a good way to lift your spirits, and you can go back and look at them later when you are feeling really down.
Hugs, Sharon
I appreciate all of the responses. In terms of going to a different rheumy, it took me 6 months to see this one (rheumy #2), so I'm better off just waiting until Nov for my Johns Hopkins appt. Neither of the rheumys would consider lupus, etc, because my ANA wasn't elevated. This rheumy said she wouldn't consider a lip biopsy with my Schirmer's test not being positive, but I don't think it will ever be positive now that I'm on Restasis and my eyes are under control.
I don't feel that I'm depressed. I don't get weepy and I still enjoy doing the things I like, when I feel like doing them that is. And when I say "feel" I mean when my hands don't ache or my fatigue isn't bad, not emotionally feel. I emotionally want to do a bunch of fun things, but my body just doesn't. I have a neurologist appointment today, but am pretty sure that will go nowhere. He did mention the possibility of it being "psychosomatic" but that amounts to the same thing I guess...
One thing which may change everything is that I'm on an antibiotic for a sinus infection. The last 2 times I was on an antibiotic, I'd go into a month-long flare up after finishing them. It's sad that I hope to have some awful VISUAL symptoms after I'm done this round so I can go back and show my doctors the "evidence" that's it's not just all in my head.
Well, I took a vacation of sorts. Then my leg broke and I am back to seeing all kinds of doctors. :) LOL
Joe,
Glad you are back here; wishing you well!
So glad to see you back posting Joe- missed your humour and grounded advice.
Sure wish you could have extended that vacation from the medical establishment however!
Hi Vtmommy
I have a diagnosis but I would like a vacation from drs. I had a dr and dentist appt last week and this week I have/had 2 dr. appts.
I am trying to work part-time, see my family, take care of house&gardens, shop,etc....and the drive to and from the dr visits, the time spent with the dr. and getting RX filled at pharmacy. TOO MUCH!
Thats too much time out of my life and I am resentful. On the other hand, what if I couldn't afford a dr., what if it was years ago and no meds for this or even a SJS diagnosis even possible?
I long for the good old days...see my gyno once a year and dentist twice a year. That was all. No meds either back then.
(sigh..........)
eye2dry
I agree with others that maybe you haven't got the doctor you need.
BUT, with that said, sometimes I do take "time off" from my health problems. Sometimes I just say - for the next two weeks, I'm not going to deal with it... In my case, that means things like: no dr. appointments, no dealing with forms and paperwork from the insurance or billing, not spending time on research the next possible solution. It means things like: trying to see friends, do some of my hobbies, or even just sitting outside and enjoying the fresh air.
I think of this as taking a vacation from my health problems, even though the problems are just sitting there.
But, it can help.
My guess is that if you really are having some of the issues that you are dealing with, perhaps 6 months is a bit too long a break.
But I get where the frustration comes from!
Glad you're back Joe! Not the best way to take a vacation...
I had an EMG yesterday at the neurologist (talk about painful) and the neurologist said everything is normal and it's not neurological in nature.
It's easy for me to say I'll take a vacation from doctors when I've felt almost normal the last few days. No idea why that is, but I find it odd that I feel better on antibiotics when they usually make me feel awful. I wouldn't be quite as burnt out with doctors appointments if they were only my own. My dog had an encounter with a weed whacker around a month ago, so I have to bring him to the vet every week for a splint change. My son (5) is home with pink eye today. I'm sure my other son (3) will be home with it tomorrow. At least the weather's nice. :)