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Doctors Dont Agree

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#1 memeto2


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Posted 06 January 2007 - 02:02 AM

hello,well I had an appointment with my reumatologist thursday,i havnt seen him since I have been to john hopkins.he asked me what dr wigley said and I told him that he said I had limited sclero.well he doesn't agree.he said he feels it is diffuse because of all the tightening around my mouth and my fingers being so swollen.he said dr wigley has only seen you this one time and hasnt seen the changes in you like I have over the last 16 months.well now he wants me to go to pittsburg to see dr medsger.i am soo confused ,i dont know if I should go there or not.im tired of all these dr appointments,as im sure all of us are.i just dont understand one dr says im in remission and have limited and the other says I have diffuse and I should do something about it now ,he wants me to do that I.v study they have going on in pittsburg.can anyone give me some advice..please.thanksand take care memeto2

#2 Sweet


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Posted 06 January 2007 - 05:28 AM

Hi Memeto,

Oh hon, I'm so sorry for your confusion over all of this. It truly is hard to figure out what to do sometimes isn't it. I don't have any great advice on this, other than go with what your heart tells you to do. I think there have been many here in the forums that have seen Dr. Medsger, so hopefully they will give you some feedback on what they thought and if you should go.

I guess if it were me, I'd go. Just one more opinion and then decide a game plan.

Hang in there my friend.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Heidi


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Posted 06 January 2007 - 06:53 AM


I am so sorry you are stuck in this quandry. How frustrating!! So, the discussion isn't necessarily about your diagnosis per se (i.e., limited vs. diffuse) but how to treat it (i.e., do something aggressive since it is diffuse vs. it is in remission so let's see what happens)? Is that correct? I am asking because if the conflict ONLY concerns the diagnosis, I wouldn't worry too much because often the treatment is the same. BUT, if the real point of contention is what treatment to pursue, and your current rheumatologist thinks you need something aggressive because of the progression he is seeing, then I think I would agree with him. Because as he said, he has watched the changes whereas the other doctor is only seeing you at this one point in time. I wonder if he could do a phone conference with Dr. Medsger (or whoever) to help him determine what treatment to pursue without you having to travel across the country again? Another possibility to think about is for you to contact Dr. Medsger directly (e-mail maybe) to discuss what has gone on and see whether he thinks it would be worth it for him to see you and/or your chances of getting into the study. Again, that might save you making a trip across the country.

Here is a link to another thread where Dr. Medsger was being discussed.

Please keep us posted on what you decide.

Warm wishes,

#4 memeto2


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Posted 06 January 2007 - 05:07 PM

thanks pam and heidi,yes heidi that is correct,it is how they are going to treat it.that is what has me confused,i really dont want to do the I.v treatment if I dont have to.i go back to john hopkins february 14 and I will have alot more questions for the dr.and yes I still might decide to go to pittsburg,a third opinion won't hurt.my rheumotologist used to work in pittsburg and knows dr medsger personnally.as a matter of fact he called him while I was there thursday.dr medsger told him he would have to see me and that I would have to have some lung involvement,which I will have my pft's done wednesday.so we'll see.i just really like dr.wigley and hate to go anywhere else.but I will..take care.memeto2