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Well I saw him today & just felt it was a waste of my time. My general practitioner did say what is he actually doing for me - & I must admit nothing!

 

He is sending me for a CT scan & the nerve conduction tests (which should have been done 3 months ago) again. I told him about the pains in knees, hips & lower back & red swollen hands but felt as if he is not really doing anything to actually help.

He said wait & see what the cardiologist says after the stress test next week but her appointment isn't until March so that's when I'll get the results, he didn't say when my next appointment with him would be and I felt rushed out of the clinic.

 

I have now been off work since May & am going to go back to work in the next few weeks. I'm wondering how I'm going to cope because of the tiredness that I feel & all the other symptoms. My general practitioner is more supportive but will not let me do full time & has initially agreed to part time, I teach which is very stressful & normally I would work very long hours because of planning & preparing for lessons.

 

Sorry to sound off like this but felt I needed to sound off to someone because of the frustration I feel.

 

Jensue

 

Diagnosed with SSc in July 2007

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It sounds to me like you need to go see another doctor or rheumatologist doctor that is more sympathetic in what you are going through. It sounds to me that you are dealing with health care professionals that aren't very tuned in to just how bad you feel and there is nothing more frustrating than that. I would get a referral if necessary and see a different doctor as soon as possible. If you could find a rheumatologist doctor that knows alot about sclero that would be your best bet. I can't imagine going to work the way I feel so I know what you are going through.

 

Warm hugs from Minnesota.

 

Peggy

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Hey Jensue,

 

I'm sorry to hear you are feeling this way about your rheumatologist. I've had similar feelings and experience with a provider. What I learned - is life is too short to waste your time on a doctor that you are paying for (I might add) to stick around and continue to pay him/her for nothing. Find another doctor that you have good rapport with, and who you feel is listening to you and who you feel you are getting something from.

 

I'm so sorry you are dealing with all of this right now. Love ya.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks for all the kind thoughts.

 

I forgot to mention but I live in the UK & so this is with the NHS. I also live a long way from other hospitals & I cannot get another referral without general practitioner & consultant agree to second opinion.

I feel disbelieved even though I know I have blood tests & physical signs that the consultant gave me this diagnosis in July. I don't particularly want to take medication but if it helps to make me feel a bit better I will do. I take a proton pump inhibitor & a calcium channel blocker. Also if you get answers & kept fully informed I think it must help with your understanding of your symptoms.

 

Jensue

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My general practitioner thought my rheumatologist should take a more proactive role in my condition. Well, she didn't, and after recently losing most of my toe, and talk of another operation to remove the rest, I say you need to be more proactive of your condition yourself.

 

Again, I have to say that I believe most of the medical personnel in the United States are totally clueless in CREST, Scleroderma and all associated illness and treat these illnesses like groping in the dark.

 

If you been out of work since May, consider seeking permanent disability as well.

 

Sometimes we have to start taking charge of our own lives, bodies and situations.


Tru

 

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

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Hi, Jensue. I totally understand your frustration, but keep on speaking up for yourself and educating your doctors in all the ways that you can. I am not so sure that is true about the second opinion thing. You might be able to get some help by using the complaints procedure that all NHS hospitals are supposed to have. Have you discussed a second opinion with your general practitioner and Consultant yet?

 

You will find out very quickly whether you will be able to cope with a part time schedule. Only you will be able to figure this out.My general practitioner turned out to be my greatest ally, but fortunately he and my rheumatology consultant seem to respect each other well.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi, We have a friend who has sclerodema in Dudley who sees proffesor George Kitas at the Dudley Group of Hospitals trust in the west midlands and has done amazing things he has a scleroderma clinic. At leeds they are doing the assist trial and stem cell transplants. hope this helps you

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Hi Jensue

 

I agree with the others...do whatever you need to do to get yourself the right help. Unfortunately, sometimes that means you need to go through a few doctors to find the right one for you. In the meantime, it sounds like your general practitioner is trying to help you somehow...nothing wrong with only part-time in the meantime as he agreed to....sounds like he feels that perhaps it will also cut down on some of the stress for you, which is not a bad thing?

 

I wish you good luck, I'm sure you'll eventually get where you need to be, it just might take a little more time.


Sending good wishes your way!

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