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Very Frustrated, Could Use Some Direction


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#21 Gidget

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Posted 14 January 2009 - 03:02 PM

Stef,

Dr. Medsger will be thorough and competent. He will personally go through a 10 page questionnaire with you. He will examine your skin and thoroughly review your records. He will give you his opinion and RX any drugs he thinks you will be benefit from. However, do not think that he will be a warm and friendly doctor. I am not saying that he does not care about you. What I am saying is that he is efficient and thorough which can come across as a little brisk. I did see him when I was trying to find a "magic" pill for sclero. I appreciated his honesty and competence but I never had the impression that we were going to have long heart to heart talks. Save the heart to heart talks for his Nurse -- Carol -- she is fabulous. I think he is the brain and she is the heart. I'm sure you will be very happy with Dr. Medsger. I just wanted to let you know my experience with him. There are only a handful of what I call "superdocs" in sclero -- and Dr. Medger is definitely one of them -- so you will be getting excellent treatment from him.

I save my heart to heart talks for my local rheumatologist who is an excellent sounding board for me. Also my local rheumatologist does my disability paperwork which is a huge pain for him as my disability carrier has him filling out paperwork monthly, quarterly and annually. He cannot stand it and if my appointment is anytime around the time he had to fill out the paperwork, I hear grumblings about it. The problem is that my condition is not expected to change and he hates having to write the same thing over and over and over. So the frustration is not with me but with the insurance carrier.

Good Luck.

Gidget.

#22 debonair susie

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Posted 15 January 2009 - 09:09 AM

That is AWESOME news, Stef!!!

I'm breathing a sigh of relief! Yahooooo!!! :rolleyes:

I'm SO looking forward to reading your post, once you've been to see this new doctor and reading how all went!
Special Hugs,

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#23 JANQ

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Posted 02 February 2009 - 01:54 PM

Hi, Stef:

I am also newly diagnosed...not with Lupus, but with Undifferentiated Connective Tissue Disease. I am very frustrated with my experiences at my rheumatologists's office.

I have experienced my problems for at least 6 years, probably longer. After being told by my general practioner, for years, that my routine blood tests were normal, and my problems were due to stress and lack of exercise, I found an excellent internist. She listened, and found an elevated ANA, and referred me to a rheumatologist (in October of 2008). After a series of tests and a skin biopsy, the P.A. in the rheumatologist's office diagnosed me with UTCD, although the dermatologist felt certain it was MCTD (Mixed). The P.A. also found an elevated dsDNA. I have brought up several times with the P.A. that the diagnosis was MCTD from the dermatologist. At my last visit she snapped, "Well, that is not his area of expertise!" My internist had told me that the two diseases were pretty much the same, at which the P.A. also snapped, "Well, they aren't!"

My visits, the first with the rheumatologist, then the last 3 with the P.A. have been frustrating. I got no responses to the answers I gave the rheumatologist on the first visit, no validation for the symptoms, as to whether or not they were pertinent, whether or not he heard what I told him, nothing. The 3 visits to the P.A. were just as frustrating. I have new issues with my skin, with which the P.A. responded with "Wow, you do have a lot of problems right now. Did you tell the dermatologist?" My thought was, of course not, I had seen him 6 weeks before and the new issues had occurred during that time. I have had excruciating all day headaches, which sometimes awaken me, and she said "Did you tell the internist?" She ran some more blood tests on the last visit, did not call me with the results, but sent me a very impersonal checklist with the remark of "Labs look great!" There was no opportunity to ask her questions, my main question is, "Why don't I feel great then?"

I requested a copy of my blood test results from the rheumatologist's office. There is never a real person who answers, so I left a message. I asked for the copies and left a phone number if there were any questions. I have not received the copies, nor have I gotten a phone call. I thought that I could at least do some research on my own if I knew what she had tested and what the results were.

I am lost right now. Do I switch rheumatologists, or do I stay and persist with my questions, etc.?

I am so frustrated, also. You are not alone.

Janet

#24 JANQ

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Posted 02 February 2009 - 02:13 PM

Stef:

I am sorry, I should have read on. I read the replies and saw that you had changed rheumatologists. Please disregard my answer.

I am very happy for you!

Janet

#25 Snowbird

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Posted 02 February 2009 - 03:05 PM

Well Stef, it sounds like you might be on your way to a very good doctor, good for you. I'm happy for you!! Let us know how you make out, only 2 more days to go! Hope you have a list ready with your questions for him. Good to take someone else along as well to take notes for you (his answers to your questions). It's hard to remember it all when you have so many questions running through your mind at once.

Janet, it sounds like you might need to do another take. If you ask and say what area you are in, the ISN Team are fantastic at sending lists of good scleroderma specialists that will be in your area or as close to it as they can be for your travels. You need someone who will listen to you and help you understand what's going on with you. Doesn't sound like the one you have does that for you? Only my opinion, but I'd move on to the next one and keep looking until you are fully satisfied that he/she has your best interests at heart. Don't give up. Just start looking in the right places. Sometimes it takes longer than others. Let us know what you decide. Take care.
Sending good wishes your way!

#26 Snowbird

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Posted 02 February 2009 - 03:14 PM

Janet

I should have also mentioned that you can have positive ANA bloodwork and still be diagnosed as UCTD because the clinical symptoms for scleroderma may not be presenting themselves you can also stay that way forever and never get worse, no guarantee either way what will or will not happen of course. The key is to ensure each of your symptoms are being monitored/treated by your doctor(s) routinely so that each symptom (no matter what disease it causing it) is being looked after for you. I believe that also includes our peace of mind ;) .
Sending good wishes your way!

#27 canon

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Posted 02 February 2009 - 04:10 PM

Stef,

Good luck with your appointment on Wednesday. Will be thinking of you.

With gentle thoughts,

Judy
A happy heart is good medicine.

#28 Stef

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Posted 05 February 2009 - 09:54 AM

Hi Everyone,

I wanted to post an update.

I went to Pittsburgh, PA and had my appointment with Dr. Thomas Medsger yesterday.

I was very pleased with how the appointment went. I was there for a total of 3 hours, and was seen by 2 doctors (one of which was Dr. Medsger). There was a very thorough history and physical taken; a complete skin exam was performed, as well as a nailfold capillary test (which confirmed Raynaud's).

Unfortunately, I still don't have many answers, at least not today. Dr. Medsger and I had a lengthy conversation about lab screenings for auto-antibodies. He spoke of frustration in the rheumatology field as many auto-antibodies are measured via ELISA testing vs "the old-fashioned way" (a longer, more expensive process). His recommendation was to have all auto-antibodies retested at UPMC (which is where his clinic is located) as they use the older method of testing, to ensure the results are accurate.

The good news is I do not have signs of skin thickening. I do have traits that are considered Scleroderma traits, but the doctor does not want to confirm or deny a diagnosis until the SCL 70 is repeated through his laboratory.

He told me the medication I am currently taking is what he would recommend (Prednisone and Plaquenil). We discussed recent lab reports (other than auto-antibodies), and there is some concern as my CRP total (C Reactive Protein), SED rate, and C3 / C4 compliment proteins are much more highly elevated (indicative of more inflammation and possible damage in the body). He feels we may have more of an idea of what's going on when the results are in.

I was very impressed with Dr. Medsger and his team, and would highly recommend his services. Hopefully, I will have more answers, soon!

Stef

#29 Amanda Thorpe

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Posted 05 February 2009 - 01:13 PM

Hello Stef

I am so glad the appointment went well and although you may not yet have a definite diagnosis it's not because no one is interested or could not care less, it's because they're being thorough and professional which is how they should all be always!

I hope that you now feel confident you're going to get somewhere, the right people are working for you and with you so that whatever outcome you get will be the right one. As I've said before we Sclerodermians are a very select group of people so should you become on of us be honoured! :lol:

Take care.

Amanda
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#30 Jeannie McClelland

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Posted 05 February 2009 - 01:26 PM

Hey Stef!

OK, I know you'll understand when I say "what good news!" :lol:

Hooray for Dr. Medsger!!

You'll let us know more when you know more, won't you?

Warm hugs,
Jeannie McClelland
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#31 canon

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Posted 05 February 2009 - 04:53 PM

Stef,

Glad your appointment went well. Hang in there, they will find answers for you.

With gentle thoughts,

Judy
A happy heart is good medicine.

#32 Margaret

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Posted 06 February 2009 - 11:16 AM

Hi Stef ,

I am glad that you liked Dr. Medsger. I did, too. Gareth had the same problems with positive blood results from ELISHA but negative in his lab at UPMC. Dr. Medsger did come up with the + ANA, speckled pattern, diffuse cytoplasm, though. Gareth's had the + AntiRNA-Polymerase 1/111 done 3 times at ELISHA and all 3 times it's been positive. Dr. Medsger's lab said it was negative. All we know is that the Plaquenil is still working!!!

Take care, Everyone.
Margaret

#33 Stef

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Posted 07 February 2009 - 03:09 AM

Margaret,

I know! It's horribly frustrating sometimes! Even with reputatable labs, there are still potentials for incorrect results. Auto-antibodies aren't the only lab results I've personally had "trouble" with. I went through 6 different labs and sets of tests as I had inconsistencies when my doctors tested for AMA (anti-mitrochondrial antibodies...liver related), until it was concluded 4 out of 6 tests were positive, and all positive tests showed the same level of AMA...ridiculous to have it done so many times!

Hugs,
Stef

#34 HouckRN78

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Posted 13 February 2009 - 03:16 PM

Stef,

Sometimes the frustration is worse than the disease! :wacko: I also have had more than one positive Scl-70 but no skin thickening (thank goodness). Unfortunately that seems to cause more confusion among the doctors than conclusions. Then thanks to my HMO (Health Maintenance Organization) (grrrrrrrr) my specialist can't seem to get my internist to order the right type of ANA. I think it's the old fashioned one with complete reporting that she wanted. Guess I'll be donating some more blood samples again so they can try to get it right. Hang in there. Best advice I ever got was to keep a symptom diary. I got a calendar with enough space to write down my symptoms each day (most days there's enough room, hee hee). It helped me to see patterns and associate some symptoms with triggers in my daily life. Hope you find the answers you're searching for!

With good thoughts,

Heather

#35 debonair susie

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Posted 17 February 2009 - 05:08 AM

This is really a "shot in the arm", figuratively speaking, of course!

I'm so glad that you were pleased with how things went, Stef. It's
so nice to feel as though you're going to get some answers to long
awaited questions, I'm sure.

(I totally agree with everything Amanda said in her post)!

Thanks for sharing the good news with us...we're as happy about it
as you are!
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)