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Partnership in your treatment


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#1 Hilda

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Posted 16 April 2008 - 12:42 PM

I always hoped that my doctor would treat me like the intelligent adult I am and discuss, consult and listen to me regarding treatment. I find that not to be the case. I am sure of their ability etc. but feel I am being treated not consulted. Is this just me?

#2 Sheryl

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Posted 16 April 2008 - 12:50 PM

Hello Hilda,
Welcome to the sclero forums. Some doctors are still in the mind set that they are the ones in charge of your health. Some have yet to figure out that we will listen to their ideas and we will go with what we think is in our best interests. I'm sure you will get several replies on this topic. I hope you enjoy being a part of this wonderful group.
Strength and Warmth,
Sheryl

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#3 truman

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Posted 16 April 2008 - 01:00 PM

Hilda:

In my opinion, the medical field does not know enough about this disease. You must be your own advocate. I had to explain to a vascular surgeon and podiatrist what CREST was; they hadn't a clue. Maybe he is unfamiliar with the disease. Ask him how many patients he has dealt with concerning the disease, the answer may surprise you. I've hooked my doctors on this this website and my podiatrist has instructed his nurses to review CREST on the web and learn everything there is about it, including himself.

Linda
Tru

It is what it is...........

#4 summer

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Posted 16 April 2008 - 02:42 PM

HI Hilda,
Welcome to the forum, you will find many friendly and helpful people here who can give you support in your time of need.

I have seen a few doctors in the last twelve months or so since being diagnosed with Limited/Crest Scleroderma/fibromyalgia. Some of them are open to questions and others give one word answers and simply do not like being questioned at all. The doctors that are arrogant or are not open to the list of questions that I have for them, I do not go back to see them.

It is very important that you try and find a doctor that you get along with, who is open to questions and who does not rush you out of the door., after all you will be having a long patient/doctor relationship for some time with them. If you feel that you don't get the answers that you want or that you feel too intimidated to speak your mind, I would probably give them a second chance at first then if things don't improve I would move on.

I see quite a few specialists, some are open to questions and others are not.
My cardiologist seemed a bit arrogant on the first visit I had with him, to try and get information from him was like getting blood out of a stone. I have seen him a few times now and he is slowly getting used to me asking questions. I stick with him because he is supposed to be the best Cardiologist around (so I'm told) at diagnosing Pulmonary Hypertension (which I may have). My Gastroenterologist Is good, so Is my Rheumatologist, so at least I have 2 out of 3 doctors which are open to questions and so forth.

I hope I have helped some

Take care
Celia

#5 truman

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Posted 16 April 2008 - 03:33 PM

So right you are, Celia

One hundred percent!
Tru

It is what it is...........

#6 Hilda

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Posted 17 April 2008 - 12:59 AM

I really appreciate the warm welcome I have had from so many people and look forward to learning and sharing info.Thanks Hilda

#7 Hilda

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Posted 17 April 2008 - 01:04 AM

I agree with your comment that many of the medical proffessionals know only a little about the disease and even find it varies from consultant rheumatologist to another in the same hospital dept. Quite often they may know a lot but seen unwilling to share it with their patient and are unhappy at admitting that each patient can be so different.

#8 Karenlee

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Posted 17 April 2008 - 01:34 AM

Hi Hilda,


Welcome to the forum. You have found a wonderful site full of warm caring people to share information with and just as important, great friends.

I understand your frustration with Dr's rushing you and blowing you off.
I was lucky to find a wonderful Rhumetologist on my first try who took one look at me and diagnosed CREST. He ordered all my testing and started me on my treatment. Aside from his knowledge, he has a wonderful bedside manner and understands how frightening this is. On the downside, he is swamped with patients and sometimes talks so fast I can barely get a question in before he runs out of the room to the next patient.

Good luck to you.
Karen

#9 Hilda

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Posted 17 April 2008 - 01:34 AM

The system in U.K. is ..you are referred to a rheumatologist consultant and he is in charge of your care. He orders tests from different other departments like cardio tests, breathing tests, physio,etc. and receives results directly to him. He discusses it with them and then reports back to you as he sees fit. There is no facility really to change doctors.It means you are in his and his associated consultants hands. Sometimes I see one consultant Mr H who is nice or Mrs G who is so understanding but unfortunately another consultant makes me feel a financial and logistical liability. Just now I was supposed to be in hospital 2 weeks ago but the consultant I can not relate to insisted depite my telling him the physical difficulties it would cause that I leave it an extra 2 weeks.I was supposed to be in hospital last Sat. for iloprost infusion, which I get every six weeks and lasts for 4 days. but as frequently happens there are no beds and I have had to wait each day for a phone call. Today I am told perhaps tomorrow. While I appreciate the pressure on beds etc. Apart from the physical problems in mobility and pain this causes, I had hoped to be in this week as I am on holiday from work but now my treatment will mean having to phone my employer and explain that I will not be returning until later in the week as after each treatment I need at least 24 hours recovery partly because of the strong drug but also because in a 4 bed ward I am frequently in with alzheimer's patients who through no fault of their own can be difficult over night meaning lack of sleep and can be quite a strain to live with for 24 hours a day for 4 days. Sometimes it is like being sent to bedlam. The addition problem work wise is that it affects my employer's budget as if it is a planned absence the main funders cover my salary but if it is unplanned as this will be it comes off my unit's budget which directly affects money available to be spent on the extemely deprived under 12s we work with. So apart from not being a partner in my treatment I have little control over when I have treatment. Loosing control of my body and what I can do has been bad enough but I am really down after these last few days so I do really appreciate your listening and supporting.

#10 Annie N

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Posted 17 April 2008 - 01:48 AM

I find dealing with doctors to be troubling with this illness, as it's not a cut and dried problem, but always shifting and changing. some visits my pulmonologist seems really "with the prorgram" and other visits I feel like he's distracted and kind of just shuffles thru the visit.
I feel like if you're not careful, you can just be labeled "scelero patient" and then forgotten, with things just kind of falling thru the cracks.
i travel once every 2 years or if my pft's go down and down, to a major center and that kind of stirs the pot and gets my doctors here thinking about the advice of an expert - that's how my last issue of more breathlessness was helped. if I had left it up to my doctors here, they would have just patted me on the head and reassured me that the drop in my pft's was just nothing, with the normal statistical differentiation, etc. by traveling elsewhere, it was looked at with fresh interested eyes and found that there may be a stiffening of my heart involved now, and they added a med which I thing does help me.
soooo, yeah, it's a frustrating deal.
sorry about the rant. I'm usually pretty quiet but I gues this just touched a nerve in me.
Annie

#11 Sweet

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Posted 17 April 2008 - 07:51 AM

Hi Hilda, and welcome to the Sclero Forums.

You are not alone in this. I too feel it's very important to have a doctor that you click with. It is our body, we need to be involved and we need to be listened to. We have the choice to accept or deny any form of treatment. If this continues I would consider getting another doctor. I'm in a similar situation, it's not easy.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#12 Snowbird

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Posted 17 April 2008 - 10:23 AM

Hi Hilda

I wanted to welcome you too! You will find a lot of helpful friends here! I have to agree with the others, sometimes you do need another opinion...if you can find some other way to make that happen if/when you might need it along the way? I wanted to wish you good luck too, and I'm hoping things will get better for you soon.
Sending good wishes your way!