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3rd Different rheumatologist appt.


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#1 piperpetpete

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Posted 10 December 2009 - 07:45 AM

Well just got back from my third rheumatologist at Emory diagnosis still unsure maybe UCTD maybe limited scleroderma BUT I did get them to send a referral to UAB for a specialist!! Finally, after a year of weird symptoms. So now I wait to get a appointment. there. I feel a little better with getting to THIS point. As the rheumatologist at Emory said "I've had every test available and all the blood work." I know this still could b a "wait and see" situation but I do feel like I've finally accomplished SOMETHING! Now just gotta get on Emory's tail and make sure they send the referral within the next couple days.
Hope you guys are doing good and having productive days....I FINALLY had one! :emoticons-yes:
Carol

#2 Sharon T

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Posted 10 December 2009 - 08:16 AM

Congratulations, Carol! Persistence pays! :lol:
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#3 Joelf

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Posted 10 December 2009 - 08:49 AM

Good for you, Carol!!! :happy-day:

It's nice to find that there may be light at the end of the tunnel at last!! :)

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#4 sarasmile

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Posted 10 December 2009 - 09:40 AM

Carol,

I'm from Atlanta too. I'm very new to all of this (hadn't heard of scleroderma until a couple weeks ago). My first Rheumatologist appointment is on Tuesday, and it's down on the south side of Atlanta because that's where I used to live and it's who my doctor recommended. Since I haven't been yet, I don't know if I will like them there or not. Did you like your Rheumatologist at Emory?

I hope you find some answers soon!

-Sara

#5 Lucy H

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Posted 10 December 2009 - 10:35 AM

Hi Piperpetpete.
I am also going on my 3rd rheumatologist. I have switched because as symptoms are progressing I am now going to a large center. Sounds like you are also.They all have confirmed that I probably have CREST, and probably other stuff, etc. Somehow I am looking for a definitive answer. It sounds like you are struggling with the same kind of thing. My ANA is high but other blood is ok. That and the centromere pattern in addition to symptoms is the basis of their suspicions. I'm not sure why it will help to be definitively labelled-somehow it just does. Hopefully you will find all of your answers at the specialist. You are right to keep on them if you don't get that referral. I think so often as helpful as they try to be, some doctors see such extreme stuff that unless you are on your last legs (especially if you look healthy)they are reluctant to really look closely at symptoms and diagnose. It sounds like your bloodwork was fine so does that mean your symptoms are nothing? I am just a person who prefers black and white answers but this autoimmune stuff is hard to define.I do think it helps to post and see what others have who are experiencing the same symptoms. If nothing else, it adds to your education to ask better questions or rule out stuff. Good luck with everything. I am out there in the same boat.

#6 piperpetpete

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Posted 10 December 2009 - 10:43 AM

Sara, Hopefully you will like your rheumatologist. I didn't like the first her thoughts "there is no pain in scleroderma"....wow. The second has spent quite a bit of time with me but still no diagnosis. Wanted to get a referral and Emory guy was ok with that but said he would be really shocked if they stated I had systemic sclero. When I go to Birmingham, I will see how that turns out and hopefully, if need be, I'll keep my second rheumatologist here who will refer with the ones in Birmingham. Anytime you'd like to talk, let me know :)
Carol

#7 piperpetpete

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Posted 14 December 2009 - 11:55 PM

Hey Lucy all my baselines came back normal but my ana was high anywhere from 1:320 to 1:640. I do already have another autoimmune disease, ocular myasthenis gravis, for 20 years but it only effects the eyes and hasn't been that difficult just visually. I have burning pain in several muscle areas, been a runner and heavy exerciser for 30 plus years so all this was discovered quickly as the pain just wouldn't go away, even with rest. I lap swim now but still, issues and my blood work did reveal SCL 70 POSITIVE. All the other blood stuff was normal even my CPK this last go around was normal, before I just switched to swimming and weights, it was elevated some but not too high. So go figure. I did get Emory to call for a referral to UAB Sclero Center so finally I'll get some answers from the experts! Good luck with "rowing your boat" :VeryHappy: And get to a specialist. I kind of feel like I wasted a LOT of time with the first 2 rheumatologists other than having the 2nd one run the baselines. Let me know what you find out! :bye:

#8 relicmom1

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Posted 15 December 2009 - 05:15 AM

I have CREST and I, too am on my third rheumatologist. I started with the symptoms, etc about 12 years ago. It took 2 rheumatologists and 5 years to get a final diagnosis. Now I go to Johns Hopkins in Baltimore to a wonderful doctor. Johns Hopkins has a scleroderma clinic and the doctors there also do research in scleroderma, so I feel they are the most up to date with info and knowledge of this disease. I would suggest anyone with this disease see a center of excellence. The "regular" rheumatologists just don't know much, if anything about sclero. I have to drive about 3 hours to get to see her, but I feel the trip is well worth it. I wish you luck and I hope you like your new specialist when you finally get to see them.Posted Image
Peace :)
Barbara aka relicmom1

#9 Cheryle

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Posted 15 December 2009 - 08:16 AM

Sara,
I see Dr Jonathan Waltuck at Emory. He is very good and likable as well. He was recently listed as one of Atlanta's Best 100 Doctors; chosen by other Medical Professionals. As far as the other male Dr there, don't even waste your time ....

How did your appointment go on Tuesday?
Cheryle

#10 piperpetpete

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Posted 15 December 2009 - 08:40 AM

Hey Barbara,
Yes this is a good day....my appt. at the SCLERO CLINIC in Birmingham is scheduled for Jan. 26th. I've heard good things about this research sclero clinic so I am hoping for a definite diagnosis. Good luck with your doctor!! Posted Image

#11 sarasmile

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Posted 16 December 2009 - 07:21 AM

Cheryle,
The appointment yesterday went fairly well. I liked the rheumatoligist a lot - she seemed very determined to figure out what the problem is. She said she was not convinced either way that I did or did not have scleroderma, though she seemed fairly certain that it is autoimmune. They are re-doing the bloodwork and she sent me for a chest x-ray yesterday. There are several other tests she would like to schedule. The one odd thing is she was testing my muscle strength by pushing against a limb and I was supposed to resist. It was like I literally wasn't trying. She said her main concerns were that, the frequency of my heart palpatations, and lung function. I'm anxiously awaiting results and more scheduling so we can find some answers!
-Sara

#12 piperpetpete

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Posted 16 December 2009 - 12:47 PM

UH....Would that male doctor there at Emory have a last name that starts with a "G"? Just wondering :glare:

#13 piperpetpete

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Posted 16 December 2009 - 12:49 PM

Good luck with that, Sara and let us know what your baselines are....sending good thoughts :happy1-by-lisa-volz:
Carol

#14 Piper

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Posted 17 December 2009 - 06:25 AM

Hi All, Just wanted to say I'm in the same boat as I've had symptoms for over 10 years, 2 rheumatalogists and still no definite diagnosis. I've got to the point that I don't go to the Dr. anymore. I figured I can't be too severe or I would have had a diagnosed by now. I just take day by day and try to get on with my life. Sometimes that's all you can do. Best of luck with your appointments.

Hugs, Piper

#15 Cheryle

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Posted 20 December 2009 - 02:35 PM

Piper,
Yup! Dr "G", that's the one!
Cheryle

#16 Cheryle

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Posted 20 December 2009 - 02:41 PM

Sara,
Sounds like this doctor is a good one, wanting to do several tests.

When you said you were to push against her, it was literally like you werent't trying did you mean you could not; that you didn't have strenght to do it?

Let us know as your test results come in.
Hoping for the best!
Cheryle

#17 sarasmile

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Posted 21 December 2009 - 06:51 AM

That's exactly what I mean. I was trying to push back to prevent her from being able to move my arm, and it was as if I wasn't even trying, even though I was. It was like I was practically limp. And even though I didn't have the strength to keep any of my limbs from moving, I was exhausted from trying. Still haven't gotten any results, but she did set up a cardiologist appointment for me on 1/5.