Amazing day! Saw my PCP, who said to me that he didn't care for the dilly-dally Rheumatology is giving us. He told me that he spoke to the office PERSONALLY about my case.
He went on...."I can give you two definitive diagnoses but I don't think it will stop there. Right now I can clearly and confidently diagnosis you with Sjogren's Syndrome and Rheumatoid Arthritis."
I could have kissed him! The card I was handing to him seemed not enough, suddenly. I wrote a note in it that the Methotrexate has helped restore my life. And a P.S. that reflected our last conversation with me in the physical rehabilitation place.....when he told me that he had done his homework on Sjogren's. That note also said that I was willing to lend out my two books that have been the mainstay of my learning of autoimmune diseases. Both are by Dr.Daniel J. Wallace of Cedars Sinai in California. They are: The Sjogren's Book. The Lupus Book. When my PCP saw the Sjogren's book, he was excited and asked about it before I gave him the card. We had a hour long talk about risk & benefits, and how to proceed from here. I have found the best PCP in the world.
That's awesome :)
Dee
While I am sorry to hear about your diagnosis, I am happy you finally have some solid answers. I think too many of us are floating around with ambiguous diagnosis such as "probably Sjogren's", "likely Sjogren's", or "highly indicative of...". It sound like your PCP is amazing.
Congrats! It is amazing how great you feel when you find the right docter (s). It just gives you a whole new level of hope & trust.
Happy for you!
SjoDry
Thank you everyone! Sjodry, you are so right.....the happiness, the hope....somebody is willing to put it on paper! Now I can get services at home, because of the diagnoses. My friends have long pushed me to get services.....I just couldn't without the formal dx.
He wrote a slip for blood work......my old rheumy would have written a dx code to hide under.....my PCP wrote Dx: Sjogren's Syndrome, RA.
It was so nice to see a doctor write it!
We drew 6 viles.....ESR, C reactive protein, liver function tests, 2 anticonvulsant levels, and a CBC.
Congratulations ( I think)
You have the exact same 2 diagnoses that I have.
Will you be using Plaquenil with MTX?
Did he mention that later down the road maybe the use of biologics>
I know the relief of finally getting a diagnosis for your symptoms versus the final knowledge there
is no going back.
take care.
eye2dry
Yay SjoAmy Yay!!! ;D
I don't think that Plaquenil will be used because this past March or April, I couldn't pass my Plaquenil Field Vision Test. Scores were bad enough that ophthalmologist contacted rheumy, and both agreed to drop Plaquenil. Eye doc told me to stop it....and I did...but I was calling rheumatology just about every day....nothing to counter disease....they put me on Cellcept (mycophenolate mofetil). Cellcept was May 6 to June 13. Was without anything until Sept , when after my surgery, I was put on 3 Medrol dose packs, and on September 24 began Methotrexate.
Had an interesting conversation with PCP.....some of you may have had it with your docs.... Well the disease can cause x,y,z. Well the medicine can cause the same x,y,z.
I think he was surprised how much I knew about this already.
It is so awesome to be able to get out of bed within 10 minutes instead of an hour.
Meds of years past, Celebrex (gave me major edema everywhere), NSaids (incited complex migraines),
Flexeril, Plaquenil, Steroids, Cortisone shots, Cellcept.
Like I told doc.....we were leading up to this point. :-\
I'm so delighted for you, SjoAmy.
Getting validation is very important. And there are some very effective medications for RA, and the treatments for both Sjogren's and RA overlap.
And to have a truly intelligent, sympathetic, and caring doctor is worth the world!
Something I've been thinking about: I think it is hard for doctors to 'see the person' when the person has several conditions and takes several medications.
I think the challenge of multiples conditions and medications is so great that at best the actual person is a bit lost in the shuffle, and at worst the actual person is seen as a PROBLEM.
The person is the problem. I had an OB/GYN, a very nice beloved woman, who would say "Here comes trouble" when I walked into her office. Because she had done very long complex surgery, with another doctor, that had gone terribly and complexly wrong. And even before the things that went wrong were finally found and addressed (6 months later) I was found to have a major coronary artery blocked 95%. My doctor was horrified that she had done 4 hours of surgery on a woman with arteries so blocked, and no one knew it.
So when she saw me, she actually said "Here comes trouble". She was smiling, she didn't mean to hurt me, and at one level I KNEW she didn't mean to hurt me. But I had become trouble, not my heart condition, not my massively infected surgical site that required two more surgeries, but ME, I was trouble.
I see that in this forum. Those of you who post here often have a string of conditions at the bottom, and medications. I look at that and am amazed at the vibrant, funny, real people you are, in spite of that long string of conditions. But when does a doctor or any professional really get to know you? For who you are? Maybe over a long period of time, but I've moved three times since my medical saga began, and it isn't going to happen for me with anyone.
And I think the long list makes it much much harder to happen. I see it in the faces of the nurses when I'm being prepared for surgery and they want to put the 'allergy alert band' on my wrist. What do we do with this one? It's almost too much.
This is why we need each other so very much. We help each other deal with that blockade that comes up with doctors. We help each other explore the things we can't explore with doctors or family and friends. And most of all we see, even if only in printed words, how much more every single one of us is than that list of conditions and medications.
Hugs, Elaine
I completely agree with Carolina.
I always send my doctors a Christmas card. Last year, I decided to include our family newsletter despite my mom?s objections in previous years. She doesn?t know I did it!
Anyway, my rheumy and I have always had a good relationship, but since the newsletter went out, we have a great relationship.
She or he sees that I am more than just a Sjogren?s patient.
Quote from: lighthouse33 on October 12, 2013, 01:48:57 PM
She or he sees that I am more than just a Sjogren?s patient.
I would have been lucky if I was seen as a Sjogren's patient.
I didn't even get that -- until NOW-- Thanks to a good PCP who realized excessive inflammation is no good for the body......I got the diagnoses & more importantly the treatment that I needed.
The Story....
For many years, despite readings of 7.0, 5.0 (right after beginning Plaquenil), 8.0 for the SSA/Anti-Ro Antibody, and a RF of 11, and a ESR that grew from 36 (when I first saw him), to 60 (last time),
My rheumy would say to me, "Well lots of people can turn up positive for antibodies and rheumatoid factor and not have anything wrong with them. I refuse to treat you on the basis of inflammatory markers."
And then he put me on Cellcept.
And then I was fired.
And somehow I no longer believe that it was about me being curt with the secretary when she told me "you're not sick. I have patients who are sick that I have to take care of.",
I believe it was that the rehumy, realizing Cellcept worked ( I called the week prior to update on the progress of Cellcept)
THE RHEUMY REALIZED I HAD A PROBLEM.......AND THAT HE HAD NEGLECTED ME.
FOR 3 YEARS!
I suffered needlessly with all the problems that Sjogren's Syndrome and RA encompass.
While I don't mind rewarding (like my PCP) with a card--he did a lot of advocating while I underwent surgery, and nurturing his desire to learn........there's one thing I do mind........
As patients seeking what is wrong with our bodies, we should not have to BRIBE care with cards, candy, gifts whatever to doctors and nurses and staff.
They should WANT to do their jobs.
As for my old rheumy.......good riddance to bad rubbish!
Dear Amy angel,
The description of your Rheumatologist's behavior brought tears to my eyes. Tears of both pain AND ANGER.
Doctors don't always sweep their mistakes out the door, sometimes they bury them!
A secretary who said that sort of thing would be FIRED IMMEDIATELY by any doctor with any pride, standards and guts.
He also did YOU a favor to 'fire you'. I had a pain specialist 'fire me' because he couldn't help me and didn't want to waste his time. It was funny in a way, and I had a cardiologist who did the same because I went to the best heart hospital in Atlanta instead of letting him admit me to the boondocks hospital of his choice. I wound up with a MUCH BETTER CARDIOLOGIST as a result.
I have a friend with RA who takes the entire range of medications: Plaquenil, Methotrexate, Prednisone and a 'biological' as well. And probably others I don't even know about.
She is upbeat, active, and has not had the bone deformities that so often come with RA, because it was caught early. I hope you can have such a positive turn in your life.
AND I hope that you can find it in your heart to 'let go' of resentment against that doctor and his secretary. Resentment does to our souls, minds and spirits what inflammation does to our bodies.
Those two people go on with their lives, but our resentment can be eroding our health. I would wish for them all good things, all peace and serenity and success. The things that I want for myself, which always includes kindness and usefulness and openness to learning. If it so happens that they NEED those things badly, well, I only want for them what I want for myself!
Your Story prompted me to respond. I'm glad it is having such a new and improved chapter!
Hugs, Elaine (aka Carolina)
Quote from: SjoAmy on October 13, 2013, 07:10:21 AM
Quote from: lighthouse33 on October 12, 2013, 01:48:57 PM
She or he sees that I am more than just a Sjogren?s patient.
I would have been lucky if I was seen as a Sjogren's patient.
I didn't even get that -- until NOW-- Thanks to a good PCP who realized excessive inflammation is no good for the body......I got the diagnoses & more importantly the treatment that I needed.
The Story....
For many years, despite readings of 7.0, 5.0 (right after beginning Plaquenil), 8.0 for the SSA/Anti-Ro Antibody, and a RF of 11, and a ESR that grew from 36 (when I first saw him), to 60 (last time),
My rheumy would say to me, "Well lots of people can turn up positive for antibodies and rheumatoid factor and not have anything wrong with them. I refuse to treat you on the basis of inflammatory markers."
And then he put me on Cellcept.
And then I was fired.
And somehow I no longer believe that it was about me being curt with the secretary when she told me "you're not sick. I have patients who are sick that I have to take care of.",
I believe it was that the rehumy, realizing Cellcept worked ( I called the week prior to update on the progress of Cellcept)
THE RHEUMY REALIZED I HAD A PROBLEM.......AND THAT HE HAD NEGLECTED ME.
FOR 3 YEARS!
I suffered needlessly with all the problems that Sjogren's Syndrome and RA encompass.
While I don't mind rewarding (like my PCP) with a card--he did a lot of advocating while I underwent surgery, and nurturing his desire to learn........there's one thing I do mind........
As patients seeking what is wrong with our bodies, we should not have to BRIBE care with cards, candy, gifts whatever to doctors and nurses and staff.
They should WANT to do their jobs.
As for my old rheumy.......good riddance to bad rubbish!
I'm so sorry I brought up that I send my doctors a Christmas card. I certainly don't see it as "bribing" them for good care. I see it as a gesture of appreciation, as I hand write in each card - thank you for taking such good care of me. It's more of a thank you Christmas card.
My rhuemy has been fantastic. I won't go into all the details but she has.
Here is a link where they discuss this:
http://wirednewyork.com/forum/showthread.php?t=10847
After my mom and dad each pass, I will send a letter / card of appreciation to each doctor, their staff and hospice etc. I will also thank them in their obituaries as I have seen done here.
Congrats!
I am very happy for you! Yes, pathetic that I'm happy about your 2 awful diseases, but the vindication and the knowledge that you can walk into your docs office and smash the condescending "you're a wack job" looks.and cocomments, is worth the Dx. You knew you were sick, now you have names.
Lighthouse, I don't want to put words in Amy's mouth, but I don't think she's at all saying that what you do is bringing. I have been on both sides. On one hand, I've had to show pics of my former self, enclosed in a card, in order to invoke sympathy. At the same time, I have written docs letters of thanks and even sent flowers and had my husband bake for docs and staff that I feel need and deserve some kudos ... Yes, it's their job, but these people not only do it exceptionally well, they go above and beyond. I want to let them know that I appreciate them so as to encourage them.
Peace and blessings,
~Andrea
I have been taking holiday goodies to my PCP for about five years (which is how long I've been ill). She stuck with me the whole time the jury was out and never ever suggested I was a wack job. She sent me to specialist after specialist until we figured it all out. Her job, absolutely, but also well worth the recognition.
Two other things:
1. Each year I receive solicitations from the nonprofits that employ my docs (hospital systems), I make small gifts in their honor because it is one way I can say way to go doc). They don't know how much I gave, just that I gave. The smiles on their faces after I did this the first time were enormous.
2. If you receive evaluation forms after your visits, particularly with a not so good doc, please fill them out and return them. I saw a palpable difference in my neurologist from one visit to the next after a not so good visit (typically they are good). I noted on the eval that I thought he might be having a bad day and I know the eval is supposed to be anonymous, but he was sure better the next time around.
Most docs have hearts, but they are busy using their brains trying to diagnose. Some likely feel threatened by us and others inadequate because they can't figure us out. Others, like my hematologist (who I definitely did not like at first due to her then abrupt behavior) and PCP are very sorry they can cure me and tell me so. I can't imagine what it would be like to take an oath and dedicate your life to healing people and not be able to do it.
Thank you Velcro & Andrea!
Let me clarify myself.....
before foot-in-mouth syndrome occurs....
I am always willing to give rewards for offices/doctors/staff/nurses who go above and beyond the call of duty. When I was in the physical rehabilitation place I filed out "SMILE" cards for those who helped me.
I also went around to those who really touched me, and thanked them personally.
I was also not afraid of contacting the charge nurse, shift supervisor, or the supervisors of whoever was screwing around with me. Especially medication nurses. To issue complaints, of course.
I've had mistakes that altered my life done by hospital staff, mistakes that threw me in complicated situations but survived them. I don't take mistakes lightly.
Like wrong dose of Dilantin (adult instead of pediatric) pushed in all at once, instead of over 3 hour period, which sent me into a coma for 2-3 days & I had to relearn my name, address, etc. I was 10. As a result, my leg turned black (I have white skin) my lymph nodes partially died, and lymphedema for the rest of my life.
Lately I have had a lot more mistakes than kudos to deal with.
I think there is something out there of somebody owes somebody. But I don't owe anybody anything at anytime if they don't do their job correctly.