Rheumy Update

[flutterbee]

First of all, thank you all for the good thoughts. It means so much to me to have your support. *sniff*

Ok. I *love* this new rheumy. Only problem is he has to be pushing 70...figures right? He pulls no punches. He tells you what he's thinking...thinks out loud, kinda mutters to himself saying things like 'I'm going to have to do some reading' or 'I'm going to have to think about this'. He was very thorough. No white coat for him...he was wearing a suit. LOL My last rheumy touched about 2 places on my back and touched my shoulder...didn't even have me get out of my chair. This guy was so thorough...checking out everything. Noticed and had the resident feel the difference between my hands - told him to feel the puffiness in my right hand and then to feel the left. Stuff like that that I've been noticing, but no one else even acknowledges.

Came right out and said that there isn't enough family history to explain my heart disease at my age. Came out and said - after I told him about the other rheumy and the fibro diagnosis - that I deserve a better answer than that. Came right out and said that with all of my issues there *has* to be a common thread somewhere.

He was impressed that my GP gave me the steroid injection in the SI joint - said most doctors don't do that. Was impressed that I put my hand right on the SI joint first time without feeling around. LOL Told him when it hurts, you know exactly where it is.

Said at the very least I have bursitis/tendonitis in my right hip, right shoulder and one other place I don't remember - knee maybe. Told me that the bursitis in my hip is bad and he doesn't know how I've lived with it for this long. Running more blood work, including another ANA and sed rate to see if they come back positive again. Told me not to get frustrated if they don't as they fluctuate. Said he's definitely going to have to see me a few times to get this all taken care of - so many symptoms, all of the medications, etc.

So, still searching for answers, but now I have someone who's willing to look.

I'm so relieved. I can't even describe it. I'm also exhausted, so if this post jumps around I apologize. Having a hard time keeping my thoughts straight.

My appointment was at 2:30 and didn't even see the resident until 3:30 (also very thorough) and then the dr with the resident at around 4:00. I'd wait all day if I have to. I like him that much. Now that I know it may be a while, I'll just plan accordingly. Not a problem with me.

I had my mom take me because this was at the University hospital and I haven't driven in Campus Area in years and trying to get around that hospital complex pretty much requires a PhD. I was reading the directions to get there last night and there was like a whole page on getting there and then parking. With all of my cognitive stuff, I never would have gotten there by myself. I think I can handle it now that I know where to go, though.

So, that's that. I go back on the 19th. I'm so relieved I'm on the verge of tears.

Thank you again for all your support.

 

[witzend]

Woo hoo! You gotta love it when a doctor takes you seriously! So many of them don't seem to anymore. I'm glad that you had such a good appointment.

 

[tiredmommy]

I'm happy you've found a doctor that gets it. Get some rest.

 

[gcvmom]

Well, that's a little sigh of relief, I'm sure! It's thrilling, isn't it, when you find someone who's been around the block a time or two and knows their stuff really well! I hope he's able to come up with a treatment plan that provides you with as much relief as possible, and hopefully also solves some of your other medical mysteries while he's at it!

 

[Star*]

Heather -

FINALLY - some relief in sight!!!!! You deserve it! I'm happy you found a doctor to listen to you! WHAT great news my friend!!!

Hugs

and passes kleenex because we don't want you getting all snotty boogers like Bubba.

 

[flutterbee]

He's funny, this rheumy. He really does think out loud and I can so relate to that...I mutter a lot, too. Made me giggle.

He kept asking, 'Why did you have a retroperitoneal hemorrhage?' I bet he asked that out loud close to a dozen times. Then saw that I had a second bleed after the second heart cath. Then told him how the neurologist commented on how much I was bleeding with the EMG. He was going to run some kind of anti-coagulant bloodwork but saw that the neuro already did. (He really likes my neuro, by the way, so even though my medical records from the neuro had errors it makes me feel better. He said they figure things out over there.)

Now, I know from my research that the bleeding issue can be part of lupus or other connective tissue diseases (the bleeding thing has a name that I can't spell off the top of my head) and isn't always detected with bloodwork. I have had times where I would scratch my arm normally and get the purpura or petechia (sp?) which is the little red dots which is bleeding under the skin. I'm going to talk to him about this more at the next appointment. I've always thought that it meant something, but again everyone has ignored it. The fact that he was thinking along the same lines makes me want to talk about it some more.

And you know, I had the heart attack and everyone else has been yeah and you're young, but then let it go. No one seemed to 'get' how sick I really was. I told this guy that I was barely functioning before I had angioplasty. He looked at my discharge papers from the hospital and saw which arteries were stented and how blocked they were and said that he can tell from that that I wasn't getting around much before they opened them up. Then went on to tell me the story of his doberman and how sick she was with her heart disease. LOL But, he wasn't downplaying it. He acknowledged that it was very severe disease and that I shouldn't have it at my age and that's why he thinks there has to be some kind of common thread.

It really makes you wonder how some of these things are so easily overlooked. To me it's like a neon sign, you know? It's been so incredibly frustrating.

Now, I always thought that bursitis and tendonitis were overuse injuries and I can tell you that that is not the case here. So, you know me....I'll be doing some more research.

 

[Hound dog]

Well, d_a_mn Heather, it's about time you found one with a head on his shoulders. Woot Woot!

Gee, you have 2 docs with brains and the sense to use them. Careful, you're tempting me to move back up that way again. lol

You know, I love a doctor who isn't afraid to tell you he needs to look stuff up. That's a doctor who knows his stuff, but experience has taught him he doesn't know everything there is to know / or keep it all stored in his head.

Awesome news!!!

((Hugs))

 

[trinityroyal]

Woo Hoo!
How wonderful that you've found a Rheumy who LISTENS to you!

And how cool is that, that he's taking the Resident by the hand and showing him (her?) how to be thorough and thoughtful and knowledgeable too. If he trains all of the residents he works with in the same manner, who knows? Maybe there will be a whole group of doctors out there who are willing to listen and think and pay attention.

So happy for you, Heather.
Yay!

Trinity

 

[DammitJanet]

Heather...are you taking in borders? It sounds like I could use a good doctor like that! Im so thrilled you are seeing someone who has a brain.

 

[meowbunny]

I'm so very very glad for you. Doing a happy dance. He may never come up with a complete answer but I bet he won't quit looking until he does. It is so wonderful to find a doctor who cares.

 

[Wiped Out]

Glad to hear there is a competent Rheumy on board!!

 

[susiestar]

Heather,

I literally have tears running down my cheeks, I am just SOOO happy for you.

I totally know how much having a doctor who is thorough, pays attention, and SEES what is going on can mean to you. My rheumy is pretty much the same way. It is awesome.

I think, between him and the neuro, they will figure something out. If he knows the neuro, or at least OF the neuro enough to know that they figure stuff out, it is a very good sign.

Here is to hoping he continues to be healthy and works well into his 90's, or at least until he figures this out and helps you feel better!!!

Sending big hugs,

susie

 

[flutterbee]

Thank you so much.

I tell you...he found places that hurt that I didn't know hurt. LOL I knew I had shoulder discomfort, but it wasn't bad. He touched it one time...not hard at all...and I jerked away. He said that's the bursitis/tendonitis area. And from that one touch my shoulder is really sore now and is radiating down to my elbow. And he explained things to me as he went. And he could tell by examining where the issues were without any reaction from me. For example, when he was checking my ankles, he checked the left, then the right. It was tender, but not bad. He asked if it hurt and I said it was more tender than the left and he said that made sense. He spent a lot more time examining the right ankle. That may not sound like much, but no one has ever done that before. My GP did some, but not like this - which I wouldn't expect her to because it's not her specialty. But wouldn't you think the other rheumy would have done a physical exam? If he can tell by simple physical exam, why hasn't that been done? ARGH!!!

Anyway...... I'm glad it's being done now.

One of the reasons he needed more time was to be able to go through all of my records more thoroughly. Cause I brought them all...cardiology, neurology, rheumotolgy, neuropsychologist. It's a stack about 2 inches thick. hehehehehe

And he scheduled me to see him with a different resident next time. He made a point to tell the scheduling people that. They're even double-booking me to get me in because the other resident will be leaving.

Janet - I told you on your other thread to hop on a plane and come on over. I could use the company.

 

[SearchingForRainbows]

Heather,

I'm so glad you finally found a competent, caring doctor!!! It sounds like you're finally on the right path towards better health. I'm just so HAPPY for you!!! WFEN

 

[Lothlorien]

Sounds like you finally found a good doctor! YAY!!!! It feels so good when they finally listen and not just throw their hands up because they don' know. I'm very happy for you!

 

[Shari]

Awesome news, Heather. Glad its looking up!