Triciae, best of luck! You will give those doctors a challenge, for sure!

My thoughts and prayers will be with you, triciae. And I hope for a positive outcome. Stay strong.

jude

Adding my good wishes to the pile....hope you are overloaded with prayers and good wishes.
Linda C

Sending lots of positive and healing energy to you!

Alexa

Tricia, of course you will stay in my thoughts and prayers along with prayers that you will help your Drs. learn and that they will help you heal.

I'm wishing the very best for you and will be watching for your updates.

Lee

Wishes for a safe trip and reports of better health.

Yes, I've been thinking of you a lot lately, knowing this is coming up. I echo all of the above sentiments. Keep a pad of paper near you, and write down all your questions as you think of them, so you don't forget to ask the doctors when you are there. Obvious, but I'm so guilty of not doing that and forgetting questions until right after the doctor leaves the room. Sigh.

Good luck to you!

Sally

I'm sending up some prayers, too.

Good Luck~

Best good healing thoughts for you and knowledge for the doctors!

Wishing you a successful trip Tricia! I sure hope those docs can help you.

Linda

Hoping for great progress with Sjogren's at Johns Hopkins. I'll be thinking of you.

I too wish you a positive and productive stay at Johns Hopkins. I always look forward to your posts - and think to myself - how does one person know so much about so many things?
Jane

I so hope that the docs at Johns Hopkins can help you. Will keep you in my thoughts. And please keep us updated!

Ally

Hope everything is going well.

Ann

Good luck!

Thinking of you and wishing the best for you.

jude

I wasn't sure of the exact timing but I knew it was soon. You'll be in my thoughts and prayers. Here's hoping for the absolute best outcome!!

You're in good hands at Johns Hopkins. Wishing you a successful and healing experience!

Sue

Thinking of you and wishing for the best!

Sue

Best wishes for you! I have high hopes that the docs will be able to make you more comfortable!
Ellen

All the best!!!

I hope it all goes well for you, Tricia!

Praying for you Triciae, for healing and comfort! You are in good hands!!!

Tricia, I was just talking about you today and all the wonderful bread baking lessons you shared with us. I have not made a bad loaf of bread since reading your lessons! Thank You! I've been sharing them with others and they are most appreciative.

Sending positive thoughts on healing and a speedy recovery.

Becky

Wishing you the best Tricia.

Wow. Seeing this thread & reading your best wishes brings tears to my eyes. I thank you all from the bottom of my heart.

We are home from John Hopkins. Aside from spending all day Wednesday in John Hopkins Bayview ER the trip went as scheduled. Even ER is different than other ERs I've experienced. No waiting...absolutely none. They wheeled me straight in & a doctor was there almost immediately.

I just can't say enough good things about our experience, how we were treated, the competency of all staff, knowledge, even the cleanliness of the facilities were exceptional. Just driving into the parking lot & looking around the buildings (it's a BIG place) you knew you were someplace where you'd be in good hands.

I'd also like to compliment our New Jersey forum members. What exceptional courtesy & helpfulness we encountered both going down & returning.

So, how did the actual exam, subsequent discussions, tests, etc. go?

Let me first say that I feel honored because at the end I was selected to become part of two National Health Institute (NIH) studies. If I can help others then this entire trip was a success. As part of these studies, I will be having spinal taps & 28 vials of blood drawn amongst other procedures 4 times a year. So, I guess we'll be visiting Baltimore frequently going forward.

First outcome...I definitely have Sjogren's & most likely it was a sudden onset back when I first got sick at age nine. Still it was good to have such a thorough & knowledable explanation of the disease & what was happening inside my body as a result of the Sjogren's. I even suspected what was at the time diagnosed as Rheumatic Fever was actually Sjogren's. We'll never know for sure but evidence strongly points in that direction.

There's more though that we did not know or even suspect. Well, I should say, "probably" more. Remember that spinal surgery I had 15 years ago, or so?

My JH doctor, I think he is a guru, suspects Geniculate Ganglionitis. Wow! Sounds like an STD, doesn't it? :)

I won't bore with any more disease details but have included a Wikki link for the curious. It's poorly sourced but there's really not much available so this article will have to suffice.

Results? He wants me hospitalized there at JH in the pain management department. They have a team of specialists from all health areas that he tells me are the best in the world & he wants their imput.

Problems? Well, it seems one has to be recommended for this particular unit but I've got that criteria met (my doctor is a member of this team that treats patients on this ward.) But, the other team members have to review my case & then, I guess, they vote. I've never had to apply & submit a resume to be admitted to a hospital before! :)

Assuming JH approves my admission then there's another hurdle. Insurance. My doctor sorta hinted that this could be a big hurdle but that he would handle it himself & not have it go through regular administrative channels.

What if my health insurance won't pay for such specialized medical care? Then, we go to Plan B. Outpatient. Not as good. They can do things in hospital, in a controlled environment, that are impossible as an outpatient. Plus, in hospital, I'm captive & available for a multitude of tests that he wants done.

What do I do in the meantime? Doc says the "process" of admitting will take weeks, even if successful. (Not immediately life threatening, just miserable.) He doesn't like the medications I'm currently taking AT ALL. But, he doesn't want to change a darn thing until he feels confident of our forward planning. Says the most important thing immediately is to keep me as stable as possible & changing medications could have unknown consequences.

It was unfortunate that I ended up in ER 'cause that prevented a full day of further testing; but, he said those tests could be either rescheduled or done in the hospital (if we get that far). The ER visit also provided him with the opportunity to see for himself the weird things my body does.

Thanks again for all the support. Please know that it really is meaningful to me.

/tricia

Here is a link that might be useful: Geniculate Ganglionitis

Good to hear from you and I hope you get accepted, have no insurance problems and most important "get properly diagnosed" so you can be properly treated. Good luck.

Ditto what eandhl said! Again, stay strong triciae. Still keeping you in my prayers.

jude

Nice to hear from you, Tricia. I truly admire you for wanting to participate in these tests. You are something else - a good something, for sure.

Hi Tricia:
I didn't know all this was going on.
Don't look into Conversations much.

You helped me when I first joined the CF and
I'll never forget it.

Hope everything goes well. You deserve the best.

I will put your name in the Prayer Box,
of a friends Bible Study Group.
Stay Strong,
LOU

Oh, I'm so glad it was a positive experience! And I hope it keeps being postive. Thank you for agreeing to the study and helping others in this way. I also hope that you can be helped in the process. Good to see you posting!

Tricia, I'm glad to read your update and will continue to send you good thoughts. I hope you and your Dr. can win over your insurance company - I know you have great negotiating skills and he seems willing to go the mile for you.

Wishing you the best,

Lee

I'm not too sure I deserve any "thanks" for agreeing to the NIH studies. Frankly, I'm scared. I just know deep inside there's a responsibility that's been given to me along with the opportunity of relief.

I'm not the only woman out there wondering why being in the same room with her active grandkids, or those darn TV commercials where the sound gets louder, or having somebody I love try to give me a hug, or a cool breeze across my skin on a hot July day or swallowing a spoonful of ice cream to moisten my ever dry mouth (dry mouth = Sjogren's) causes indescribable pain deep in my body that doesn't go away for hours & I end up a shivering, quaking mess sitting on the side of my bed rocking back/forth screaming.

From personal experience, I know that many doctors will tell these woman the pain is imaginary, or worse, that they should be seeing a shrink & not a neuro doctor. Soon, the person suffering feels crazy & a vicious cycle begins. They start avoiding situations that have started the horrible pain in the past & their lives get smaller & smaller.

Anyway, if I can provide spinal fluid, blood, EMGs, etc. that smart folks find useful to learn more about this condition then I'm obligated.

My doctor said he believes, with treatments from several specialties, they can lower my overall pain levels significantly from the current daily averages of 6-9 to a 3-4. That, folks, is a miracle & so I signed my name on the line agreeing to participate in the NIH studies. I would, of course, receive the same treatments even if I didn't sign but there's that nagging obligation thing...

But, I'm human & scared. The tests will cause more, hopefully, short-term pain & I'm trying to get my mind wrapped around voluntarily doing something that causes more pain.

/tricia

((((tricia))))

you may be scared, and that's reasonable, but you are also very brave.

I also suffer chronic pain, but my daily is 2-4 and I can function almost normally (for me it's fibromyalgia and chronic headaches exaerbated at the moment by a pulled oblique, bruised ribs and a recovering broken ankle). If they can get your pain into the 3-4 range it will be so wonderful, especially in light of your curent day-to-day experience!

And maybe then we can finally have that lunch at floodtide :-D

you (and your family and doctors) remain in my prayers!
--Elizabeth

I can totally relate Tricia, and that's why I'm there for you too. I have suffered from chronic migranes for 25 years and have gone through many of the same issues, although my pain is not any where near as severe as yours. I also now have developed interstitial cystitis, which is another chronic but mysterious pain situation, and the attitude of most of the doctors I have seen for it, (even the uro-gynecologist specialist that I first went to), has been unbelievably careless, unscientific, and rude. I don't even want to go into the mind games I've had to put up with from doctors, family, etc. It's been from patient support groups and books on chronic pain management that I've gotten relief, rarely from doctors, although hopefully your case is going to be different. And over time, as more and more is learned about chronic pain and the nervous and immune system, many of the sufferers have been vindicated as far as it not being "all in their head," etc. And I know well the feelings that go along with pursuing a new line of treatment. Just to be taken seriously and treated like an intelligent partner in my own health management is so much of a relief for me, even if the end result is the status quo. Any tidbit I can learn along the way is a blessing for me so that's what I'm wishing for you, blessings, blessings, blessings.

Tricia, It's so good to hear that you are back home! I know that it must be an emotional and physical trip for you to make but keep thinking good thoughts. You are strong but hopefully you will become stronger with the help of JH. I'm thinking of you and only have positive thoughts for you. Keep up the good work! I'm anxious to hear more as you go through these trials. (((Tricia)))

I've had frustrating experiences with doctors too. I'm glad that you've kept pushing and haven't let yourself be written off and that you're brave enough to talk about it, because it's encouraging. I work on the Bayview campus and the downtown campus isn't far. Is there anything I can do to help the next time you're in town?

Tricia, I'm sending you hugs as I type this, and hopefully hugs that don't hurt. You are certainly brave.

My sil went through a lot of doctors before she finally found one that didn't treat her like a hypochondriac idiot, that's just a woman imagining things, and discovered that she has Epstien Barr. I'm so glad this doctor is on your side and by your side.

Sally