Stef

Very Frustrated, Could Use Some Direction

35 posts in this topic

I'm very pleased to report I called this morning, and have an appointment with Dr Thomas Medsger (one of the listed Scleroderma Specialists), at the Arthritis Clinic in Pittsburgh for February 4th.

 

I hope he can help place together the pieces of the puzzle for me, and provide much needed answers. Thanks to all, again, for the support. I'd be lost without you!

 

- Stef

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Stef, that's just wonderful! Good for you.

 

If you read much of the literature, Dr. Medsger's name appears all over the place. And, I've been to lectures by three other of the world leader's in the field and all 3 mentioned him as well.

 

Counting on my fingers and toes (had to borrow one from the dog), it's 21 days till your appointment. That's fast! We'll all be excited to hear how it went.

 

Best wishes and warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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<<Metzger>>

 

Hi Stef,

 

Oops, I guess I spelled his name wrong!!! I am so glad you could get in so quickly. Gareth had to wait 3 months for an appointment.

 

Take care, Everyone.

 

Margaret

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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.

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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

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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

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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!

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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!

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Stef,

 

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

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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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

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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


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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