Having A Bad Day

[Pooh]

Thanks for being mad on my behalf!  I couldn't believe he actually charted it using the word "Sjogrens" and the heart thing?  Ugggg.  I have been getting dizzy about once a month and have just chalked it up to my meds.  Now I don't know if that could be it....sigh.

I return to the great Rheumy Thursday for all my follow-up on the tests he ran and I'm taking the medical records with me to show him what I found.  I'm also going to ask him if he can recommend a good PCP.

I'm so ill.  The main med to treat Sjogrens takes anywhere from 6 months to a year to kick in and help.  Had he started me on it two years ago, probably would have saved a lot of my dental problems and now my thyroid problems.  I would say Luise you are right about suing him.  It would cost me in the long run.  Instead, I'm going to write the letter to the review board and I shall be writing him bad reviews on every Dr. review site I can locate.

[Stilllearning]

Congratulations on taking control of your health!!  Too often we go in and talk to a Dr. for five minutes and expect him to cure us.  I have found a way of figuring out if your Dr. is good or not.  Ask questions!!  A lousy Dr. will almost always tell you to trust him/her and treat you like you have no brain.  Sometimes a good Dr. will do that too.  If your Dr. sits down and explains what he is doing and why the chances are extremely good that he/she is competent. 

Reminds me of something I heard once.  By a process of elimination there has to be a 'worst doctor' somewhere.  And someone has an appointment with him/her tomorrow.......

[Keys Girl]

Pooh, I can't believe what I'm reading........a lawsuit is going to drain your energy, but this is unforgivable.  There are lots of other ways to deal with this kind of neglect.

I think it's time for everyone to get their medical tests ALL the time and learn how to read them.  We have been conditioned to trust these medical professionals (?) and to leave everything in their hands.........

In addition to the review board, I would certainly contact the manufacturer of the Sjogrens drug to find out what other drugs they have in the pipeline that might take effect faster, and perhaps even a referral to a top researcher because of the two years and side effects that you went through, and of course, there's probably a nice little story for one of the morning talk shows if the manufacturer is looking for some brownie points in the media.

I hope everything goes well on Thursday, just concentrate on keeping yourself well.

KG

[elsieshaye]

Wow, Pooh.  I think the letter and the ratings are a good idea.  I wish I could undo this for you and wind the clock back on your behalf.  Sending my best vibes for you to find a good PCP that's someone you can trust and work with.

[Pooh]

Sigh....well now I'm really having a bad day.  Totally unexpected follow-up visit.  Yes, I have Sjogrens (which I expected after the other labs two years ago.)  What I didn't expect was to add a third autoimmune.  I tested high for an enzyme that indicates Sarcoidosis as well.  Sent me for some more tests yesterday afternoon and waiting on a call next week on a muscle enzyme test they ordered.  Comes back elevated, then EMGs and a muscle biopsy.

I'm a bit bummed at the moment and I really need to find a really high mountain and just go scream for awhile.

[luise.volta]

What you are going through sounds so awful, Pooh. I remember reading "When Bad Things Happen To Good People" a long time ago, and if I still had it, I'd send it. This is above and beyond the imagination and I, for one, am headed up the mountain to scream with you! Sending love...

[Pen]

Pooh, that sucks. Autoimmune disorders are so weird & unpredictable, DD & I have each dealt with mild ones but nothing like what you're going through. Screamin' with you...

[Pooh]

Thank you.  The only reason he even ran that one was because of family history.  I have two autoimmunes in my history.  Diabetes and Sarcoidosis.  He said he was just going to throw that in to rule it out.  Surprise, surprise.  He did tell me again that it is very common to have multiple autoimmunes.  He said they like to invite their friends.

[Keys Girl]

Pooh, I'm so sorry to hear about this........I'll hold the megaphone for you on whatever mountain you decide works best for you.

Hoping that once you get through the shock of this unexpected diagnosis that your doctor will be able to help you through this.  Thankfully, he threw in the last test so you know exactly what is happening.

KG

[elsieshaye]

((((Pooh)))) 

[Lillycache]

So sorry to hear this Pooh..  I am sending all my best thoughts and hopes to you..  There is not much else I can say..   (((((((hugs)))))))

[Pooh]

Sorry I haven't been on for few days.  The last week I've been in a whirlwind of Doctors.  The muscle enzyme test came back fine, so they referred me to an Orthopedic to see what was up with my knee.  That morning, I had my follow-up appointment with my ENT over a third thyroid nodule that has formed.  He told me that my first nodule was continuing to grow and now with the 3rd one and my other autoimmunes, he wants to be precautionary and do a needle biopsy.  I go this Thursday for it.  Not looking forward to a needle in my neck....at all!

Then I had to go to the Ortho that afternoon and after doing some tests, he concluded I have torn something.  So had an MRI last Friday and go back tomorrow to see the results and what they are going to do.  He believes it's just the meniscus and can do arthroscopic surgery on it.  Fingers crossed that his guess is right as that will only be about a 2-4 week recovery.  I am realllllly hoping that it is fine and is just inflammation. 

When it rains it pours.

[luise.volta]

Oh, Pooh-honey, what a bummer all of this is. ALL of it!  We're rooting for you!

[dedicatedmom]

I feel so bad for you. It is true, when it rains it pours. Lately I've been trying to ask God, what am I supposed to learn from this. Health problems are out of our control though, mostly. God bless

[Footloose]

I kno I have been away for a while but I do check in from time to time.

Pooh, I am sorry u r  having such trouble.  Reading about your suffering makes my blood boil!

All of us should NOT use a GP because an Internist/Internal Medicine  is better suited for adults over 30 or those w/ any family history or who already have health complications.  Always use MDs who have admitting hospitals in a center of excellence for your community.  DO NOT USE COUNTY HOSPITALS unless that is your ONLY choice.

Docs who get As in med school have privileges at the better hospitals and C docs get privileges to trauma and county hospitals only.  Patients must still have or be their own health advocate because they call it practicing medicine for a reason.  Why not get one w/ the best practices and outcomes?

If EVER you return for a 3rd visit w/i a 2month period and u r not better, get a second opinion from a doc at a different practice who,u kno it, has admit privlgs to an excellent hospital. 

If you explain symptoms of fever, swelling, uncontrolled pain and u do not get an appt, as an existing patient, by the next day or they tell u to go to the ER, get another doc ASAP!!!  Do not wait until u need a refill or get sick again, do it while u r motivated by your disappointment and frustration.  It can take time to get your first new patient visit, depending on specialty and treatment needed.  Do not fire your doc until u have had a visit and approve the replacement doc.  A complaint call to your insurance company (if the doc is in their network) can go a long way in getting u a quick appt for a new doc.

Pooh,  dear Pooh, please contact me if u need any help in finding a center of excellence in your areas or in finding a specialist. 

I have almost 30 yrs w/a major US Health Insurer, volunteer as a patient advocate and am a savy heathcare consumer, now that Iam2 feet shorter....