This morning's appointment with Rheumatologist

[LisaMarie]

Yes.  I'm very anxious about today's first meeting with the Rheumatologist.  I'm going in with the mindset that I probably will NOT get a diagnosis today.  But I'm also relieved that I know what to talk to him about thanks to this board mainly.  Preparation.  When my eye specialist asked me a lot of questions about different symptoms, I didn't know what he was talking about.  When asking about pain, I said no because to me, my pain was "normal"...everyone has this pain and it is all part of getting older because, I am 46 already.  The next day, I wake up in the morning, take my first step and my right foot felt like it was going to snap (like it does almost every morning).  Ouch.  Later in the day, as I laid resting during a period of fatigue and pain ran down my legs, I began to think, "oh, wait.  Is this the pain he was asking about?"  I've had it for a long time.  I'm sort of used to it.  Take some advil and wait for it to go away.  No biggie right?  Numbness in my hands?

(remember short paragraphs you newbie....sorry)

"No, I don't have numbness in my hands."  Go home.  Get on the computer.  Start to think, "wait this numbness?  But it's because I'm using a mouse?  Typing too much? "  There is probably a good reason for it.  Ignore it like I usually do?  Oh wait, I feel the numbness when I drive too.

(Speaking of driving, my arms get so tired when driving, I tend to drive with my legs.  I'm very good at it.  Of course, when I'm on a road with lots of turns, I use my hands when needed.  But I do like to rest them.)

Oh, my thumb hurts a lot.  My left thumb.

Hair breakage?  Oh, yeah.  But most of all my life.  It's just my hair type.

So, what are my goals today? 

1 - Fatigue
2 - Brain fog
3 - Palpitations and breathing

All the rest I can tolerate at this point.  I can still run if I can get the fatigue cleared up so I don't sleep through the days and nights.  I sleep a lot!  Brain fog needs to be fixed so I can do my job.    Those two items get cleared up and my mental mood/health will improve greatly. 

The palpitations and breathing scares me.  Especially since I do run.  I should be able to walk up a flight of stairs without sounding like a 100 year old woman who smoked all her life. 

I'm prepared to cover off on some history too.  The UTI's - I've had many of them in my life.  My kidney scan a few years ago showed some scaring.  They blamed it on my uti's. 

Pleurisy.  I was diagnosed with it about two winters ago.  I still have times when I take a breath and a sharp pain goes right through me. 

Always dry skin and dry eyes.  Dry mouth - There again, that is normal right?  I mean I've never talked to anyone about it but doesn't everyone have a tongue that feels dry and gets sore often?

So much to talk about.  I'm anxious.  He has access to my labs.  I'll talk to him about those too. 

[Meld256]

Hi LisaMarie,

I was very anxious about my !st Rheumatologist appt. too!  Unlike me, you are being realistic that it's doubtful that you'll have a diagnosis. 

Funny how we get accustomed to things bothering us and how we rationalize them, isn't it? My very dry eyes I figured were from my extra hours at work spent on a computer all day.  Dry scalp; uh, maybe I had a dandruff problem all of a sudden. 

Good luck with it all.  Sounds like you've got a plan.  Ask questions and take notes.  Please update us later about how it's gone for you.
My thoughts and prayers are with ya. 
Melinda

[Nancy60]

You sound like you're well prepared.  Good luck with your appt today.  I hope your Rheumy listens and investigates, is willing to treat symptoms even if you don't get a diagnosis yet.  Keeping my fingers crossed for you!

Nancy

[mshistory]

I've always done the same thing about rationalizing all the things that turn out aren't normal - but we live with them for so long, these things seem completely "normal" to us!

I have intermittent chest pain, coughing, shortness of breath, dizzy spells, etc. and just had a chest x-ray. I made the mistake of looking at my x-rays before talking to my doctor and to me, they look normal (yes, I know, I shouldn't be playing doctor and comparing my x-rays to pictures on-line!) which is just frustrating because there is obviously something going on, but I'm worried nothing will show up on the tests so I'll just have to live with these symptoms (which are worrisome and bothersome). So I definitely understand this feeling of knowing something isn't right but fearing you won't be able to get a diagnosis (or treatment).

Good luck w/your appointment - I hope it goes well!

[Joe S.]

Good luck with your appointment. Please keep us informed.

[bjnc]

Have you written all your questions and concerns down?  Sometimes we get into an appointment and forget some of the things we wanted to ask, so a list is very helpful.

Becky

[LisaMarie]

Have you written all your questions and concerns down?  Sometimes we get into an appointment and forget some of the things we wanted to ask, so a list is very helpful.

Becky

Yup.  I have notes written with information on my short meds list, longer symptoms, questions, expectations or desires of the visit, past issues that may relate, etc.

Just 30 minutes away but this morning seems to be going sooooo sloooooow.

[LisaMarie]

So, he's very young.  But, seemed very knowledgeable.  I really didn't need my notes because he asked all of the right questions and allowed me to answer completely.  He really did spend a full hour with me.  I meet 3 out of the 4 requirements for Sjogren's according to him.  My mouth did not appear dry on the visual exam but he said that happens and he could have a lip biopsy done if we want.  I told him that I wasn't necessarily there for a diagnosis but to treat the symptoms with the three big concerns to me being

1 - Fatigue
2 - Brain Fog
3 - Palpitations

He said that the palpitations could be a hormonal (spelling doesn't count) thing.  My heart sounded good and my blood pressure wasn't up so he's not too worried about it right now.

He said as far as he was concerned, I had sjogren's.  He wants to treat me with plaquenil for now.  See if it helps with the fatigue and brain fog.  He wants me to ignore my husband's concern on me taking too much advil and take it for pain since it isn't a high level right now.  He also encouraged me to hold a dialog any time I needed with him through the online system in place by their practice.

In three months, return to him.  He wants to repeat the some of the blood work at that time to include checking the ANA and vitamin D levels.

I'm hoping the plaquenil works!

[anita]

That sounds like a productive appointment.  He seemed attentive, open minded, willing to treat without biopsy, and most importantly, easy to reach should something come up later.  It doesn't get much better then this...win win as far as I see it.

[itssue]

Wow!!! He sounds like a keeper.   

[Joe S.]

sounds good.

[irish]

Wow, Sounds like that was a good rheumy and that he knew what to ask and what to do with the information. Count yourself very lucky!!!

When we talk about answering questions from the doc it really can be a corker.

I was with my husband at the doctors the other day for a pre-op in order to have a colonoscopy. The doc asked him all these questions and hubby would answer "no". I kept looking at my husband like "you've got to be kidding". I finally looked at the doc and asked "who is this sitting next to me?"

I swear that we complain of so many things to the doc and they don't always listen and then when they ask the questions we will often answer incorrectly. Why??? Because we have lived with our symptoms for so long that we don't look at them as bad or unusual. It is just the way our body is.

This, of course, is wrong, but it is hard sometimes to put things in perspective. We have symptoms that have been with us for 40 years but we think this is normal. Makes it tough getting the right info to the right place. irish

[Meld256]

LisaMarie,

As anita stated, I don't think it gets any better than this!    I am so glad you had such a productive appointment.

A rheumy who allows you to answer completely, spends time listening to your most important concerns, AND will treat you accordingly for your symptoms??  Wow!
Plus there is an online discussion you can have with the doctor?  Can we clone this guy for all of us? 

Plaquenil might make a big difference in your levels of fatigue and brain fog. I really hope so. It's helped mine quite a bit, along with the joint pain. 

Thanks so much for updating us about your appt.  Sounds as if he put you at ease. Good luck!
Melinda

[LisaMarie]

Question - How long did it take before you noticed a change due to plaquenil?  I don't want to expect immediate results unless I'll get immediate results.  But I don't want to feel like it will be 2 months...I want it asap.  lol 

And with that said, I've used my spoons for the day.  I'm going to bed at 6:30pm.  Night.

[Still in the hunt]

Night Lisa