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Post by jeffn on Oct 19, 2009 18:34:02 GMT -5
or random thoughts while fixing the garage door opener.
Why don't we ask our Doctors for references? Or have you? When we go to a Rheumy for the first time why not ask for a list of their patients with SD so we can speak with them and see how they have found their care and what have their results been with that particular Doc? In my job people are always asking for references why not do it with Doctors. It's easy with your local GP just ask around but with specialist it seems to be harder. I know many on the boards recommend asking a Rheumy how many SD patients they have etc. but why is it not commonplace to check references or is that what you guys have done and I just missed the boat somehow?
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Post by steve201 on Oct 19, 2009 19:25:15 GMT -5
Jeff when I was first diagnosed...we asked our doc's if they had ever seen a patient with SD...unfortunately I didn't have the where with all to ask to speak with them....we did ask for doc's that had experience with SD and got those doc's........anyone we were asked to go see..we asked if they had ever treated a schleroderma patient..if they hadn't...we'd tell them to go study up on it and we'll come back...9 times out of 10...we went to someone else that had experience with this mess....
it's hard to find patients with SD..that's why I started searching the web for people like me..especially when I started recovery ...I wanted to help someone else any way I could...even with some medical treatments and any moral support I could offer...
we've lost a few people to the disease here and that has torn me up....some came here for advice...and for whatever reason...didn't take any advice or recommendations that we all offered.....it's heart wrenching when that happens....
Steve
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Post by sherion on Oct 19, 2009 19:54:10 GMT -5
I must have lucked out. I never asked any of my docs about other patients, just never think to do it when I'm there. My rheumys very first patient as a rheumy was a sclero patient. My gastro doc knows to look for collegen build up when doing my endoscopes and my heart guy knew to give me an ACE inhibitor for my blood pressure. They all seem pretty up on sclero.
It could be an invasion of privacy if the docs gave us a list of other patients unless he got their okay first.
Sherion
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Post by kathsherman on Oct 19, 2009 23:55:24 GMT -5
I definitely checked with my rheumy regarding his experience with sclero patients. I also mentioned that I would love to meet others and speak to them. I think (it was awhile ago) there were "confidentiality issues" attached to medical professionals giving out personal info? My Dr. did encourage me to attend the local sclero support group because he thought several of his patients may have been members and I could meet them. kathleen
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Post by christel on Oct 20, 2009 7:14:22 GMT -5
The first thing I thought of with this idea was the confidentiality one-unfortunately good intentions don't cut it in our world these days! Having a rheumatology/scleroderma office have a patient sign a waiver of sorts would probably be way too much hassle for most and take too much of their time. Therefore, the old fashioned word of mouth is going to have to keep us connected!!!
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Post by klw1960 on Oct 20, 2009 11:15:50 GMT -5
I guess I am lucky because my doctor at the Cleveland Clinic tries to connect us SD patients as much as possible. He will call me in between appointments to ask if I will talk to a newly diagnosised patient about my treatments and experiences and when I go there for IVIG and another SD patient is there, we are usually room mates. I have made many good friends and found good tips through this process.
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Post by jeffn on Oct 20, 2009 11:21:29 GMT -5
My suggestion was kind of tongue in cheek and I know that won't really work but I do not see any reason not to inquire about the Docs experience with SD patients. I would have done that with my first Rheumy IF I knew what I had at that point. I think he was clueless about SD. He never did tell me what I had but when I transfered my records to Rheumy#2 the DX was in his notes. I guess I did not need to know. I was in to see my GP today and asked if he had any other SD patients, I see him a couple of times a year and always ask if any SD types have turened up. I always hope that the answer is no. I am very happy with the care I receive from him, he said not currently but did have one a few years ago for a while. We are few and far between.
I would think that any doc that does work with more than a few SD patients would have one or two that would be willing to speak with prospective or newly DXd patients. I would if asked. Ah well it is what it is.
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Post by ndpblake on Oct 21, 2009 18:09:07 GMT -5
It's great if one lives near a populated area, as, for instance, Boston, MA. That's simple, Dr. T. in Boston. However, if one lives in an area not near a large city, it is a problem, unless one is able to travel financially, and physically. There is no help, let me tell you, when you live in the outskirts. I have at least 5 rheumatologists in my area, and they are here for one reason only, I think. The weather is Paradise! They have no reason to think differently from their colleagues, especially if they fish! I have gone to all of them, some of them who prescribed AP, but with reservations, and when there was a question as to what to do next, out come the terrible suggestions of Planquinell, Prednisone, Methotrexate, etc. So, to answer your question, Jeff, it can only be answered by people in large cities, because here in the small places there are no Scleroderma patients, maybe one or two, but of no interest to physicians here. If this sounds angry, I guess I am. Nancy B.
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Post by jeffn on Oct 21, 2009 20:30:51 GMT -5
Nancy My in laws live in Florida and don't have any problems remotely as rare a SD and their care as far as I can tell is less than stellar but you can experience that anywhere even in a large city not just remote areas.
Just so you know I am not exactly awash in SD support in my area. I live on an island. There are to my knowledge no other SD patients here. There are no rheumatologists here. To visit one I have three choices; slow boat trip that I can take my car on -$160 2 hours plus each way, or a fast boat trip $60 round trip and no car 1 hour each way, or last a plane trip probably $90 dollars (I have not flown in a while). This is just to get to the other side. My first rheumy was in the town where the boat goes he was terrible. I figured why spend more time and money screwing around with the rheumys there. My next rheumy was in Boston so now I have to get from the cape to Boston, probably about the same distance that you would travel to get to Tampa. So it is an all day process particularly when you add in the boat trips at each end of the drive. Expense to get off island and then a car or bus trip to Boston with a day off from work and then for my first few visits I was so tired the next day was a write off too. While I am semi close to a very good AP doc it was not a walk in the park by any stretch. So it took me about a year to go to an ortho doc first, two rheumys, get a DX, do a bunch of research and arrive on Dr. Ts doorstep. Even now in hindsight it does not seem that it was as you say "simple". I guess if the first time I went to the docs and he said "hey I have seen this dozens of times you have Scleroderma you need to see an AP doc and here is the doc you need to see" it would have been easier but it was not simple and still isn't. I can think of lots of terms to describe my time with SD and simple is not one of them. I don't think SD is easy for any of us, I'm approaching fours years and I can think of a bunch of nicer ways to spend four years.
My GP, he is local, had some experience with SD at some point in his training and is supportive of me and AP although I don't think he is totally convinced. I was in yesterday for my physical and he commented on the wrinkles on my hands, lack of swelling, and how the mino was a lot more gentle on the system than the more harsh "traditional" treatments, so he may be coming around. I am fortunate to have him and my journey to AP was not complicated by people trying to talk me out of it. That did not happen until after I had already begun treatment and could feel the improvement. Some of my naysayers just are not at all informed and others should have clearly known better so shame on them. That makes me angry.
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Post by ndpblake on Oct 22, 2009 9:58:13 GMT -5
Thank you, Jeff, for reminding me that others have complications with SD care besides myself. You also live in Paradise with a few negatives for travel. I used to live on Jamestown, RI, an island, but there was Providence, RI close by, and doctors and hospitals associated with Brown Univ. was very convenient and comforting.
If I have pneumonia, or something common like that, here in Florida, I have been very well cared for. My primary care doctor went to Tufts, almost unheard of here, but she admits that she doesn't know a lot about SD. All my other doctors went someplace else. I am a terrible regional snob by wanting to find a doctor who went to school in Boston. However, when I had the Whipple Operation I went to Tampa General and had an excellent doctor there who does multiple Whipples. He teaches at Univ. of Florida. He didn't fuss around with SD, ignored it really and just did his surgery which turned out ok. It was difficult for my husband to travel the 2 hrs which he did often during my 32 days stay. With 3 hospitals in my town and many, many doctors it seems too bad that I had to go even that far. Nancy B.
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Post by jeffn on Oct 22, 2009 11:29:59 GMT -5
Been to Jamestown, nice town AND they have a bridge. Walk out the door get in the car and off you go. For me to drive on mainland roads I have to incur the expenses noted above each and every time. Imagine if you will a 32 day hospital stay off island for me or one of my family. I have done hospital stays in Boston with my parents and it is not an easy thing. There is no cruising over to the hospital after work for a visit. At one point I was traveling to Boston at least twice a week for six weeks to visit family in the hospital. That was back in the 80s - trust me Boston Hospitals are not necessarily a panacea. No guarantees i think. Not complaining I am the one that chose to live here many years ago after all. Lots of advantages but lots of disadvantages too. My point being we all have issues with our care. At least if you have Raynauds it may be easier to deal with down in sunny climes. The warm sounds good.
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Post by ndpblake on Oct 22, 2009 12:45:35 GMT -5
Raynaud's is why I am in Florida. I am lucky to be here. Scraping the car windshield is not fun. I used to cry on my way to work. Anyway, not to keep this going, I didn't mean that Boston hospitals were superior, far from it. I really meant the Boston medical schools which is just an unfounded idea of mine. Nancy Blake
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Post by jeffn on Oct 22, 2009 14:43:44 GMT -5
Do you still have bouts of Raynauds or did the move do the trick? I would think that you are not crying on the way to work any more. Maybe going "Damn it's hot!!" now.
Hey a good Doc is where you find them right. We all have different yard sticks to measure things, if a Boston trained Doc is what works for you who's to argue with that. Keep looking for that Rheumy. It took me three to get there. In all fairness Rheumy #2 was very good he just did not do AP, if AP had not worked I would probably be back with him.
Stay out of the hot sun. ;D
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Post by nhnancy on Oct 22, 2009 16:40:34 GMT -5
I was diagnosed by the hematologist, (he was formerly married to a rheumy) knew it when he saw it...he told me to find a "specialist" I had already made an appointment with my DHs rheumy (he has RA)
and had made the appointment lets say a month and a half before, so I kept my appointment, told him/his reception/nurses..I am not filling out all of that info, because I have not decided that he will be my doctor....I have Scleroderma., I need to has a consult with him, first! It was kinda funny as the nurse/receptionist, said "you have a regular appointment" I said, here is my insurance and co pay, I want to discuss this first... He met me in his office...I told him what I had, and then asked how many patients do you have with this, how much do you know about this...he was floored, then admitted to me that "he USUALLY sends his patients with SD to Boston... ...I have some that have "no so bad cases" He wrote the doctor's name down on a piece of scrap paper...I left and got my co-pay back in the mail....a week or so later.... we have a support group in our area, so that helps too!
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Post by chosen on Oct 22, 2009 18:02:27 GMT -5
Okay- On the topic of where we live......try Arkansas! All our best Dr.s won't have much to do with alternative methods, but...I have a 27 year old daughter with down syndrome thru which I've learned lots about advocacy, beating the system and getting what she needs all of which I apply to my current situation. But we all have to admit at times we get weary and it can be frustrating just trying to stay alive. But still -life is oh so sweet! Love all you guys! Lynn
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