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Very Frustrated, Could Use Some Direction


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#1 Stef

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Posted 13 January 2009 - 08:47 AM

Hi Everyone.

Again, thank you for the support shown to me in the short time I've been here. It's very much appreciated.

I just returned from my appointment with my Rheumatologist. I am very disappointed and quite upset.

As I've posted before, I'm newly diagnosed with Systemic Lupus, and was told I have "overlap" with Scleroderma and muscle weakness (told to me by my primary care physician, an excellent Internist). Today was my follow-up, and I had several questions for the Rheumatologist.

He was very rushed at this appointment. He seemed angry at me as there was a request in my chart for him to complete a short form for me to receive Short Term Disability through my job (a policy I pay for). He told me "I have patients with Lupus who have been hospitalized for complications, yet return back to work the next week". He was very uncaring.

He did not have the copy of the labs showing antibodies for SCL70, so I provided him with my copy. He admitted he had not received the results I was able to provide a copy of for him today. I re-explained the problems with my fingers, how they swell and are stiff at times. He is aware of the Raynaud's, which has been horrible lately. He has in his records my issues with GERD and with my Lungs (also currently recovering from Bronchitis), and I have the tiny "red spots" in my mouth, on my arms, chest, and a few on my face. I told him about my fatigue, the joint pain in my shoulders, and how difficult it is for me to get my fingers to work normally. His response was "Well, your fingers look fine now. I'll have to watch that."

I felt like a common criminal. I have worked hard my entire life (sometimes 2 or 3 jobs) as an RN, and was crushed by his treatment of me today.

I started to cry. I asked him if I will be feeling better soon. He replied, "I hope so".

Does anyone have any suggestions? I have only seen this Rheumatologist a total of 4-5 times over the last 2-3 years, and never seem to get answers. I was completely surprised by his reaction over a simple Short Term Disability Form.

He makes me feel like I've done something wrong. Like I shouldn't be have these physical issues, or worse, that I'm exaggerating my symptoms.

Can anyone help me? Has anyone gone through this? Am I losing my mind?

- Stef

#2 Sweet

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Posted 13 January 2009 - 09:08 AM

Wow Stef,

Where do you live? This rheumatologist sounds very familiar. My suggestion, is FIRE HIM. You need to find someone else. Seriously you need a doctor you can relate well with, that will take their time with you, and show empathy and concern. Trust me they are out there.

Sorry you had to endure that.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 jenee

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Posted 13 January 2009 - 09:29 AM

Hi Stef,

Everyone is right you need to FIRE this guy. You need a doctor you feel comfortable with. I suggest finding a new Rhemumatolgist since this is important to have. Tell us where you live and maybe somebody here can give you a good referral.

I am from New Mexico and Janey gave me some good recommendations. Luckily for me I have not gone through what you have, and I think it is terrible that you doctor acted so unprofessional. Personally, I think behavior like that is uncalled for and you did not do anything wrong!

Please tell us where you live and someone will chime in with a good recommendation.

If you need anything question, support or whatever please post here, these women are terrific and will help you through whatever.

I hope you have a bright and sunny day :)

Sincerely,

Jen

#4 nan

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Posted 13 January 2009 - 09:47 AM

Stef,

I am so sorry that you had to experience that. Get rid of that doctor and find one that will listen to you and take care of you. You are not losing your mind. That doctor is just a real twit!!!!!!!!!!!!!!!! I had a doctor ask me one time why I was on disability retirement and I looked at him and said, "Are you kidding me?" He backed down at that point. There are some wackos out there, but the good news is that there are some excellent ones too. You just need to find the excellent ones.

Take care,
Nan

#5 Peggy

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Posted 13 January 2009 - 11:14 AM

After reading your post...............and I know this sounds terrible...................but it would only be fitting if this doctor were to be afflicted with what you have and see how he deals with it! I would bet you he would be totally different.

You need to fire him and find a different doctor who has empathy. If they can't even begin to show some compasssion then how in the world can they begin to even care on how he doctors you.

Did you have him sign your short term disability form anyway. It's none of his business if you are going on disability. You paid for the policy you should be able to use it. If he doesn't sign it then have your local doctor or internist sign it right away.

I went to so many doctors in the process of finally getting a diagnosis. I saw a neurologist who said that I had chronic fatigue syndrome. It took a year and it was going from doctor to doctor and clinic to clinic. For a while there I was made to feel that it was all in my head. I knew something was really wrong and finally got in front of doctor who agreed and was determined to put the puzzle pieces together. Now it's a 1 1/2 years later and I have in addition to systemic sclero 5 other autoimmune diseases.

Please, please take everyone's advice and get a new appointment as soon as you can with a different rheumatologist!

Good luck and let us know how you do.

Warm hugs,

Peggy

#6 debonair susie

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Posted 13 January 2009 - 11:29 AM

:o Oh Stef...I feel so bad that you had this awful experience, particularly when you were well prepared for this appointment and he discounted the symptoms you were having, as well as your feelings.

Any of us who have been to a doctor like that...do just as it's been recommended...he doesn't deserve a patient like you, my friend. It makes me very unhappy that he made you cry...that makes me very sad.

One day...soon, I hope...you are going to find the perfect doctor...the one who will administer the treatment you deserve, as well as need.

He's not nice and I've reported such doctors to administration, before.

Take care, Stef and please...keep us posted...okay?

Soft and loving Hugs,
Susie
Special Hugs,

Susie Kraft
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#7 Stef

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Posted 13 January 2009 - 12:07 PM

Thank you, everyone, so very much.

I'm so grateful I found this site, as the support is incredible. I felt so alone before, and now I do not.

I will taking everyone's advice and have definitely decided to find another Rheumatologist. I live in the Pittsburgh, PA area, and I did see a Scleroderma Specialist listed for Pittsburgh. If anyone has seen this Specialist, please let me know.

Thank you for all the support on a day I really need it!

Warm Hugs to All!
- Stef

#8 Jeannie McClelland

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Posted 13 January 2009 - 12:29 PM

Oh Steff, what a bugger! NO - you are not losing your mind.

Most of us have had similar experiences, but it certainly doesn't make it any easier. I'm with everyone else: FIRE HIM!

Do you know about the Consumer Bill of Rights and Responsibilities that was adopted by the U.S. Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998. It is also known as the Patient's Bill of Rights.

Three things that are especially applicable to you are:

Information disclosure

You have the right to accurate and easily-understood information. . . If you speak another language, have a physical or mental disability, or just don't understand something, help should be given so you can make informed health care decisions. (QUESTIONS ASKED SHOULD BE ANSWERED - ALWAYS.)

Choice of providers and plans

You have the right to choose health care providers who can give you high-quality health care when you need it. (YOU CAN SWITCH DOCTORS!)

Respect and non-discrimination

You have a right to considerate, respectful care from your doctors, health plan representatives, and other health care providers that does not discriminate against you. (CONSIDERATE AND RESPECTFUL CARE!)

I've paraphrased a bit here, but you get the gist. You probably knew about it already, but it would be worth quoting if you wanted to complain about that unfeeling so-and-so, either to him or the administration of the hospital he is associated with or, if he is board certified, to the board.

I'm sending you warm virtual hugs, a big mug of hot chocolate *with* whipped cream, and a whole plate of hot buttered cinnamon toast. Warm wishes, too!
Jeannie McClelland
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#9 Shelley Ensz

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Posted 13 January 2009 - 01:01 PM

Hi Stef,

You are not alone! I've encountered situations like that, and even worse.

Have your internist sign off on the form...and refer you to a new rheumatologist, too. But stick with the internist, like glue.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Snowbird

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Posted 13 January 2009 - 01:15 PM

Hi Stef

I'm definitely with the others, get rid of him quickly!! You need someone you can 'click' with that understands your issues and is willing to help you. Don't worry, you will find one on the list from the ISN Team that will be good in your area, of that I am sure!
Sending good wishes your way!

#11 Margaret

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Posted 13 January 2009 - 01:41 PM

<<I live in the Pittsburgh, PA area, and I did see a Scleroderma Specialist listed for Pittsburgh. If anyone has seen this Specialist, please let me know.>>

Hi Stef ,

Man....he sounds so cruel. Why be a doctor?!?!? As for Dr Metzger, in Pittsburgh, my son saw him when first diagnosed. I liked him....a very patient, caring man who left no stone unturned when diagnosing Gareth. It may take a while to get an appointment though.

Take care, Everyone.
Margaret

#12 Nina

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Posted 13 January 2009 - 02:16 PM

Stef,

Please, please, please don't let this "individual's" behavior toward you make you feel anything other than disgust for his lack of compassion and his obvious loss of interest in his chosen profession. I have had very similar experiences, with the difference being ~ I didn't have this forum to turn to. I DID walk around for YEARS thinking something was "wrong" with me mentally/emotionally. NOT a good feeling, as I am sure you know.

I had three different rheumatologists; three different gastro. doctors; and two different Primary Care doctors -- and I'm still not completely happy with my primary care doctor. This is a disease that many doctors do not take the time to learn about. They don't seem to see the need to educate themselves on this disease. Why should they?? When it's so easy to just make the patient feel badly about themselves, write them off as a nut case, and see the next sucker!!

Okay, I'm starting to get angry, just thinking about all the negative experiences I've had with doctors makes me shake.

Please know that you are going through something that very few people truly understand. Remember to treat yourself good at least once a day! Know that you are special and you have lots and lots of FRIENDS right here waiting to hear from you!

Find a new doctor and give him/her an interview. Ask tons of questions. Make him/her prove they are worthy of handling your health issues.

Keep us posted -- and visit often!

Much love,

Nina (DE)

#13 gigi08

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Posted 13 January 2009 - 04:51 PM

Stef,

I'll be anxious to find out if you go to the specialist in Pittsburgh and to let us know what you think of him. I am happy with my doctor that I have now, but had thought about checking in to the specialist in Pittsburgh so I'll wait to see what you think of him.

I am with all the others. Fire the doctor that you have.
Gigi08

#14 canon

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Posted 13 January 2009 - 05:01 PM

Hi Stef,

Sorry you had to go through that ordeal. Glad you are taking everyones advise. Dump the grump. He trully is not needed and you deserve someone with compassion and empathy. Hang in there and you'll find a good rheumatologist.

With gentle thoughts,

Judy
A happy heart is good medicine.

#15 Buttons

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Posted 13 January 2009 - 10:41 PM

Hi Stef

I really feel for you and since you can change doctors I certainly would! There is nothing worse than being made to feel a fraud by your doctor! It is only now when he can see the physical evidence is he listening more.

My rheumatologist is a little like the one you have been seeing and he certainly seems to sit on the fence and doesn't always explain things fully or answer my questions openly. But here in the UK it is not so easy to change your doctor but at least on my last visit he did seem to be listening a little more.

I hope you get your new doctor sorted out soon.

Take Care

Jensue

#16 Stef

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Posted 14 January 2009 - 04:51 AM

I'm very pleased to report I called this morning, and have an appointment with Dr Thomas Medsger (one of the listed Scleroderma Specialists), at the Arthritis Clinic in Pittsburgh for February 4th.

I hope he can help place together the pieces of the puzzle for me, and provide much needed answers. Thanks to all, again, for the support. I'd be lost without you!

- Stef

#17 Jeannie McClelland

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Posted 14 January 2009 - 06:05 AM

Stef, that's just wonderful! Good for you.

If you read much of the literature, Dr. Medsger's name appears all over the place. And, I've been to lectures by three other of the world leader's in the field and all 3 mentioned him as well.

Counting on my fingers and toes (had to borrow one from the dog), it's 21 days till your appointment. That's fast! We'll all be excited to hear how it went.

Best wishes and warm hugs,
Jeannie McClelland
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#18 Sweet

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Posted 14 January 2009 - 06:34 AM

Oh Stef, that is wonderful!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#19 Margaret

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Posted 14 January 2009 - 07:45 AM

<<Metzger>>

Hi Stef,

Oops, I guess I spelled his name wrong!!! I am so glad you could get in so quickly. Gareth had to wait 3 months for an appointment.

Take care, Everyone.

Margaret

#20 Amanda Thorpe

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Posted 14 January 2009 - 09:59 AM

Hello Stef

I've just read this thread, please let me fire him, please, please!! :lol:

Amanda
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