Rheumy frustrations

As you all know, I’ve been complaint a bit more lately (my apologies). I have my regular appt with my rheumy tmrw. I’m going to try to get him to answer some questions. He’s still calling this UCTD. At my last visit I asked him about my malar rash which at times is sooo bad. His answer was “well we had you checked by a derm and they didn’t say it was positive”.
Yesterday I got the report from the derm. It specifically states “positive” and whatever they saw is usually seen in "bullous lupus erythmatosis "

My rheumy had asked for a copy of the actual slides initially. He had their derm look at supposedly and say they didn’t feeling like it was positive.

This is a major NYC hospital. The specimens were sent to another major NYC hospital.
He has me on 5mg of medrol…that’s it!

I have:
Degenerative disc disease
Fibromyalgia
Osteopenia
Hypercalciuria
Arthritis-knee spine, fingers, wrist
Synovitis-knee,fingers,
Chondramalacia -knee
Tmj
IBS
Occipital neuralgia
Migraines
High bp
Tachycardia
Episcleritis

Positive ANA

What is the problem here? Am I wrong for being so frustrated with him? I made an appointment with a local rheumy but I’m nervous. Where I live, the doctors are very hit or miss that’s why I’ve been going to the city. But I feel like I’m not getting anywhere and I’m getting worse! At the same time I’m scared to switch doctors.

second opinion!! I have found that the bigger city drs arent always the best answer as they are quite impersonal and often have a bit of a god complex.

that being said, no one took care of my daughters RSD until I got her to boston childrens hospital and you couldnt ever wish for a better group of drs.

I actuarial lay have an appointment with a new rheumy (local) in
The morn tmrw and my regular rheumy in the afternoon (NYC). How should I approach the new one?

Sorry … Typing on phone

Tell your new rheumy that you are looking for a second opinion and some of your frustrations Hopefully you have lab results and pathology reports to take to him. Also many of your problems may not be lupus related such as degenerative disc disease, general arthritis and may call for more than just a rheumy to manage.

Do you have an orthopedist also following? Neurologist for your migraine,occipital neuralgia, a GOOD primary physician for your blood pressure and tachycardia- etc It often takes a multifaceted approach to bring everything under control and hopefully teamwork among your physicians

Hi

Sorry you are so frustrated. It actually was my dermo that biopsyed my leg and found the lupus. I forget the formal name for the actual results. Previously I have lichen planus (skin disease). also.

I am lucky though My friends and family understand what I am going through. As soon as I was diagnosed they went into the computer and got all the info they could..

Hang in there

Cindy

So sorry your Dr. is so stubborn! I had an ER doc look at my Maylar rash and he knew it was lupus! Since then I have had spots on my shoulder biopsied and they are lupus. With all of your conditions you listed I can't believe that he doesn't see it. Yes, you need a second opinion.

Be strong!

Hugs,

Geneva

You are right- amazing what a good haircut can do for your mood!

Update:
Went to new “local” rheumy today. He was the complete antithesis of my rheumy. He didn’t even know what aralen (chloroquine) is, made a diagnosis without even looking at any of my labs (rheumatoid arthritis), cut me off numerous times and rushed me.

Off to the city…
Rheumy spent a lot of time with me today. Took 8 vials of blood. Listened to everything. Reviewed and charted all my symptoms. Wants me to start myfortic (a cousin of cellcept), increased medrol to 16 mg for 4 days then on an increased dose of 8mg/day.

I’m going to stick with him for now…unless I find someone closer. I didn’t have any kind of faith in the local doc.

Ann…you made ALOT of good points. I will just have to create a team (which is what I’ve been doing on my own) of physicians that I trust. I guess I just get in a funk, especially when I’m flaring (now), and I feel like I’m on a road trip to hell without a map.



poobie said:

You are right- amazing what a good haircut can do for your mood!

I tried that last year and chopped off all my hair and cried for months! Lol…it’s growing back soooo slowly. Never again!

Hi!!, dealing with doctors is a very hard thing to do! But you have to make them do their job. Don’t settle for just any answer , ask the questions and stand tall for the results to be explain to your understanding! There should be a friendly relateationship between the both of you , not just one side. Ask for 2nd options , make known that you really want to know what is going on with your health and body, in other words Demand quality answers …Beverly L.

I think we have the best hospitals in Boston.

Cindy

Yes. Desperately waiting for spring but winter is holding on for dear life.




Ann A. said:

Hey Zeus’ Mama,

Ain’t that what friends are for - to pull us back when we get too close to the edge - "Don’t fall into that pit honey chile, it ain’t got no bottom."

And I hope that you are keeping your journal. My brain does not remember exactly where you live - but if the season is changing - well I myself wish that it would hurry up and change already. The back and forth between spring and winter is killllllling me. OK -there I go exaggerating again. But that is how you know I am not doing so well.

Feel better. I gonna send good vibes.