View Full Version : First ever rheumatologist appt
07-29-2009, 07:09 PM
Finally got to the rheumatologist today at Duke. I was very impressed -- for those of you who don't know, Duke is one of the biggest med centers in the country, on a scale of Mayo, Cleveland Clinic, Johns Hopkins. I have been there before, but it had been a while, and the clinics, which are HUGE, are very well-run. Everything was on-time, organized, friendly. And best of all, I seemed to get a doctor who a) listens b) knows what he's doing, and c) doesn't have an ego the size of Montana. And, who even urged me to e-mail him whenever I have questions. Which works great for me.
He thought it odd that at 44 and male I have SLE with no (close) family history (one 2nd cousin died of it 30 yrs ago), and then he said he didn't trust Quest (the lab that did my bloodwork last month) so I'm thinking, 'oh boy, he's gonna say I don't have lupus.' Which, trust me, I'd rather not have it, but worse than having it would be having all these symptoms and not knowing what it was.
The other semi-weird thing he said was that most men who get lupus tend to either be a lot older OR they get it really really bad, right away. So I guess once again I'm the exception that proves the rule.
But, as we got deeper into it, he agreed that I certainly have had a lot of the symptoms (malar rash, mouth sores, joint pain, fever, fatigue, pos ANA, pos DSDNA) so it's most likely lupus.
He ran 14 more blood tests and 2 urine tests, all of which they'll post online by Monday, complete with his comments. And becuase my hip pain is the most persistent, pernicious joint pain I have, he also did a series of X-rays to rule out avascular necrosis. Which i hope he doesn't find.
Finally, and this was I think good news, he put me on Plaquenil, and said that it should eventually help with the fatigue.
That's all I have to report - though I have felt like sh## all day, I worked from home this afternoon and took a 2-hour nap with our schnauzer (who just got spayed yesterday) lying upside down, paws in the air, jammed in (and sleeping) between my leg and the side of the recliner the entire time I napped. It was adorable, I must say.
Now I'm just hoping the Plaquenil works, soon.
07-29-2009, 08:19 PM
This sounds like good news...I am happy for you. I hope th Plaquenil kicks in quickly, but just keep going anyway.
07-29-2009, 08:57 PM
Oh Brian....this is good news! Finally, a post about a decent Rheumatologist appointment. I was beginning to think there was nothing but crap out there.
I'm so glad to hear you got a good one that a) listened to you, b) knew what he was doing, and c) kept his ego to the size of Hawaii....or at least kept it hidden from you if it was bigger.....
It's great news that this doctor is rechecking all the labwork and being very thorough in his investigation. And that he has gone ahead and started you on the Plaquenil in the meantime. I truly hope it will make a difference in how you feel. It's awesome that you found a doctor that is actually making use of the modern technology of EMAIL for his patients to communicate directly with him.....IMHO, every single one of them should have to do that. :yup: As well as the online lab results, with comments from the doc. Great idea! Again, shouldn't everyone have this system up and running??
Thanks for sharing this good news with us....and please keep us posted when you get all your information back from him.
Keeping my fingers crossed, that this will be the med that helps you.
You are in my prayers....
p.s. you made me giggle with the description of your dog....paws straight up! :laugh: Glad you both got in your naps today.
07-30-2009, 07:03 AM
Brian, good for you. (?!) All of my neg ANA's for the last 3yrs were from Quest labs. Now I have a positive thru a hospital lab. I will be going to Mayo..someday..lol I'm on the waiting list. Hopefully I have as good of luck as you. I'm seeing a local rheumy Monday for the first time.
Best of luck!
07-30-2009, 09:20 AM
This does sound like good news to me too, I hope it isnt lupus
07-30-2009, 01:14 PM
good for you!! Sounds like you are going in the right direction. I too get very bad hip pain at times. Last summer I thought it was going to put me over the edge. I assumed it was from my back ...didn't know it was a flare(before diagnosis) I just went to Rheumy #3!! I have been goofed around and Rheum # 1 also was not happy with my labs from Quest.Interesting.(I am in NJ) Luckily, I too am close to NYC hospital if I must.I was trying to avoid that..I live right near one the best teaching hospitals in the country, Hackensack University. I also have a connection at the NIH in Maryland but I don't think I should have to go out of state for good care:cute:Hang in there.
07-30-2009, 02:18 PM
Oh im so glad he sounds like he listened and hope the plaq helps you real soon.Also hope the dog heals soon too.
07-30-2009, 02:24 PM
I sure hope that you don't have AVN. I have it in my right knee. I've found it even more difficult to find a doc who understands AVN than it is to find one who understands Lupus. Luckily, I'll bet that there is an OS at Duke who will be good.
Good luck with all,
07-30-2009, 04:42 PM
Thanks all of you for the supportive (as always!) and caring posts. Makes it much easier to get through this cr## knowing y'all are pulling for me and everyone else on here.
07-30-2009, 04:53 PM
It is terrific that you had a first appt. with a doc who listened! With respect to the Plaquenil, don't be discouraged if it takes some time to work. It could take up to six months for you to notice a significant difference. For others, it works more quickly. Stay with it. Hopefully you will see some relief in the very near future.
I get the hip pain also. Totally uncomfortable. I found some hand warmers that you get at the sporting goods store (Like Bass Pro, etc.). They come in a packet that you bend in half. This starts a chemical reaction that causes the packet to heat up. Lasts for about 6 hours. They are small. I slip them right inside the hip area of my jeans. Really helps.
Good luck with the test results. Keep us posted.
07-30-2009, 08:45 PM
I am glad to hear you had a good experience with the doc. That's really great news that you found someone willing to work with you and not on you.
Hope you and the pup are feeling better really soon! That nap sounds too cute! Hope your wife caught it on film for your mantle.
07-31-2009, 01:24 PM
thanks for the kind words and the tip on the hand warmers - I know exactly what you mean and have used them before, so I'll give them a try.
It's funny how my hips are the only consistently painful place on my body, and it never seems to vary regardless of drugs or activity or whatever.
08-01-2009, 12:39 PM
I saw my pain mgmt doc Monday. He injected my hip in 3 places. It was great...for a few days. The pain was back full force in the night last night. I also have a schnauzer, a mini. She is 10 months and we almost lost her Tuesday. She must have gotten into something outside, since she eats everything, that gave her a terrible reaction. Heart rate was very low, she couldn't even hold her head up. Well $785 later, the emergency vet couldn't figure out what caused it. But she is now back to her normal, cheerful self.
Good luck to you and your schnauzer!
08-05-2009, 10:47 AM
Glad to hear your schnauzer is okay! Ours is healed up from her spaying and is crazier than ever - probably the most playful dog I've ever known. Just a bundle of personality!
Got my labs and hip x-rays back today and no problems so far with necrosis; blood work was all pretty much normal except since he didn't do DSDNA or ANA (or at least it's not posted yet, if he did), I don't see much to compare to my earlier results. All my red blood indicators are still high, but at least white cells are back to normal. Eosinophils are high too.
Sedimentation rate was normal, which I take as a good thing.
08-05-2009, 04:23 PM
Thanks for sharing all this. I have to say I am a little jealous but I think I have an okay doctor. I am so happy to hear that you are getting the treatment/labs that we all deserve to have and undergo! I do hope you get relief from fatigue and that you get answers to ALL your questions. That is a plus getting results on line and being able to email your doctor.
You made my heart melt about your 2 hour nap with your dog...I have two toy yorkies and there is nothing like the love from your dog and taking naps together as they sleep right next to you and take over the bed just as children do!
08-05-2009, 06:15 PM
so sorry that i am late responding to your thread about your drs. visit....once again, the thread just appeared today.
WOW. i am so thrilled about the attention that you received at Duke. I am very familiar with their level of care...it is wonderful.
glad you are going to give plaquenil a chance, hopefully it will start working soon.
how fantastic that your dr. will communicate via email....now, you can go directly to him with your questions....what a blessing.
take care, hope you feel better very soon.....sounds like your little dog is a precious friend.
08-07-2009, 06:01 AM
Sooo, most of the rest of my labs are in...ANA positive again, and titer was 'low positive' -- 1:160.
On the other hand, sedimentation rate seemed normal, and nothing else jumped out of the tests except my white blood cells are back to normal while everything red is high. So my guess is they'll still say I have lupus -- we'll see what the DSDNA is, it's the only one not back yet.
On a happy front, I worked out hard last night for the first time in ~5 weeks and got through it and didn't flare (at least not yet!) woo-hoo!!
08-07-2009, 02:32 PM
WOO FRIGIN HOO TO WORKING OUT BRAIN WITHOUT FLAREING!!!! Now thats an accomplishment to CELEBRATE!!!! :fam21: