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Primary Care Doctor?

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#1 mando621


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Posted 22 February 2012 - 09:30 PM

Well I saw my new Primary Care doctor yesterday. It went as I pretty much thought it would. He asked if I was going to see my rheumatologist. Well, yes but not until March 6. So no real help. Don't take ibuprofin, instead take acetaminophen for the pain in my hips and knees.

I don't think he has any interest in seeing me. Every time I come in, I get referred to a specialist. Which is good, but shouldn't my pc be coordinating my care and getting updates and show some interest? Am I being too picky?

I would really like it if I could find a Primary Care Doctor that would not be impossible to get in to see, and one that would show that they are interested in learning about UCTD/scleroderma, helping me coordinate my specialists and tests I should be getting. ARRG! I guess I'm expecting too much.


#2 judyt


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Posted 22 February 2012 - 09:52 PM

No Mando, I don't think you are being too picky, that's what we all need but it is not necessarily easily achieveable. I have a general practitioner who aspires to be that person for me but she can't be available every day just when she is needed.

With this latest kerfuffle, which has landed me in hospital for weeks it seems, I tried to see her the first day but the only person available was a Registrar who suggested I see my Gastro asap. That turned out to be only 26 hours later, but by then I was very sick. From now on I will decide for myself when to go to hospital, they know me here now and even if they send me home again I will feel safer.

My general practitioner will continue to watch over everything, but I will still have to keep my wits about me.

Hope you get some better results soon. What I have found useful is to Google the name of a doctor and find out the areas they are interested in. My general practitioner likes organising care for chronic disease sufferers, my husband who has a bone cancer discovered that his general practitioner is interested in anything to do with bones!!

Warm hugs and best wishes.


#3 miocean


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Posted 22 February 2012 - 11:53 PM

I don't think he has any interest in seeing me. Every time I come in, I get referred to a specialist. Which is good, but shouldn't my pc be coordinating my care and getting updates and show some interest? Am I being too picky?

I would really like it if I could find a pc that would not be impossible to get in to see, and one that would show that they are interested in learning about UCTD/scleroderma, helping me coordinate my specialists and tests I should be getting. ARRG! I guess I'm expecting too much.


Oh, to dream the impossible dream...My Primary is overworked and couldn't manage my case time wise. I spend a couple of hours a day. I don't need referrals but I do make sure he gets copies of everything, I usually take updates with me when I see him for a general illness problem a couple of times a year. I rely on specialists and I am the case manager. I would love to get another Primary but have been told that my case is so complicated it would be difficult to find one willing to take me on. I'm special!

The best advice I can give you is to keep records of everything you can in whatever system best suits you. Do it from RIGHT NOW and it will be easier in the long run. My system is a large looseleaf notebook (which is now becoming 2) divided into organ areas then subdivided into tests. I have another folder for blood work that I began keeping this year and it is overflowing already, and another for any kind of notes I've been able to get. This system took a while to create as I would just put things in piles, or not realize the importance of keeping them and had to request them again. I don't have absolutely everything but I bring it all with me to a dr. and can pull just about anything needed out either before or during the appointment.

If you are not in a crisis situation, try to relax and not worry too much until your March appointment. It will be here before you know it and in the meanwhile, all of us will be here for you.

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#4 Joelf


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Posted 23 February 2012 - 01:12 PM

Hi Mando,

I would agree with the others that I don't think that you're expecting too much from your primary doctor (general practitioner). In the UK I'm afraid the level of expertise in general practitioners does vary a lot. Some, like mine, are absolute stars and I couldn't have better back up and help from her. However, having spoken to other Sclero sufferers I have heard of other doctors who don't seem to have much of a clue and with whom it can be almost impossible to obtain an appointment.

Miocean's right; it is important to keep accurate records yourself. The only really teeny gripe I have with the NHS treatment I've received is that the three hospitals with whom I deal have very little communication between each other and consequently my poor general practitioner is always the last person to be kept up to speed with the latest developments on my treatment and medication; a case of the right hand not telling the left hand what it's doing! I tend to book an appointment with her, take all the details of my lung function tests and anything else I need and then I can explain to her exactly what the respective consultants have advised. She's very good, but obviously not clairvoyant!! ;) :lol:

Hopefully you will get more help and advice from your rheumatologist when you see him in March.

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#5 Amanda Thorpe

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Posted 23 February 2012 - 04:39 PM

Hello Mando

Sorry but I do think you're hoping for to much in reality! The fact is doctors just don't have the time to coordinate anything for anyone whether they should be or not. I have never had a general practitioner come close to doing anything like that but thankfully I am a patient at the Royal Free so I get excellent scleroderma care.

Take care.
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#6 debonair susie

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Posted 24 February 2012 - 12:19 PM

Hi Mando,

You MAY want to ask your rheumatologist. doctors and/or their nurses seem to know who has a better working knowledge, as well as the better rapport with their patients' specialist doctors.
Bearing that in mind, is the very reason I asked my rheumatologist's nurse (first) and then mentioned to my rheumatologist that I was changing my primary care physician so she would be aware. Today, I will be calling to get an establishing appointment set up with one of the 2 female doctors whose names I was given. I have lost several doctors, due to their moving out of town/state, the last little while, which is truly exasperating :crying:
Please don't give up, Mando. This will all turn out okay for you. Please keep us posted on your rheumatologist appointment and a primary care physician update?
Have a good weekend!
Special Hugs,

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#7 mando621


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Posted 25 February 2012 - 06:24 AM

Yes, this was a post to vent. I had a pretty good primary care doctor a while ago, then her office wrote me a letter saying her practice was overloaded and if we needed to see a doctor in a reasonable amount of time then we should choose a new doctor. I changed insurance at the time and was assigned a different PC, so I went with that. Then that doctor left the practice to be the hospitalist. Now, I'm with someone else in that office since I went to so much trouble to have all my records transferred there.

From the first day, when I first saw him because my swallowing was getting worse he has referred me to the specialists. I don't have too many problems of general nature actually.

I have records from prevous medical appointments and tests, but I haven't been keeping up with things most recently. I should request the copies from the last year or so.

That reminds me, I don't think my test records ever got to the GI specialist. I called to speak with the nurse at the GI about terrible GERD trouble I have had, left my cell phone number so they could reach me where ever I might be, and they called my home number.

In fact, I called and left my cell phone number again, and they once again called my home number.

Sorry for the venting. I have actually been better about that too. I started a knitting group here in my hometown, we meet twice a month. It is a great place to meet new friends and talk about what is going on. It has been way better than going to a counselor. I also attend two Irish sessions a week, and that is great fun! I decided I wasn't going to let myself wait to get involved in things. The interaction with real peole has made a huge difference in how I feel. My husband encourages me to attend all these events even though I'm sometimes out three nights a week. He can tell a difference in how I'm feeling and what kind of mood I'm in.

Tonight, one of my friends from knitting group is coming over for dinner with her husband and 2 year old daughter. So, I need to run the vacuum around, and get started on my meal. Got to get the hubby to pick up a bit upstairs since I'm sure he will give them a tour of the house.

Have a great weekend folks!

#8 CraigR


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Posted 26 February 2012 - 10:12 PM

I'm inclined to agree with Amanda. I manage my care. I am happy that my primary care physician is concerned to remind me of who I should be seeing, etc., but to expect him to become interested in my disease is doesn't seem reasonable, since our diseases are so rare. It's a bit like expecting your auto mechanic to take an interest in your 1923 Pierce Arrow, rather than send you to the antique car restorer.

As for being able to get in to see your primary care physician - that is another story. I can usually get in within a day or two. That shouldn't be so difficult. Of couse the different plans make for their unique challenges. I've always preferred PPO (Preferred Provider Organizations) plans, since I can manage and coordinate my care without going through the primary care physician.