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Stef

Very Frustrated, Could Use Some Direction

35 posts in this topic

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

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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)

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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

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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

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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

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: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

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

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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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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

Founder and President

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.

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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!

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<<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

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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)

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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

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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.

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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

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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

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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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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<<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

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Stef,

 

Dr. Medsger will be thorough and competent. He will personally go through a 10 page questionnaire with you. He will examine your skin and thoroughly review your records. He will give you his opinion and RX any drugs he thinks you will be benefit from. However, do not think that he will be a warm and friendly doctor. I am not saying that he does not care about you. What I am saying is that he is efficient and thorough which can come across as a little brisk. I did see him when I was trying to find a "magic" pill for sclero. I appreciated his honesty and competence but I never had the impression that we were going to have long heart to heart talks. Save the heart to heart talks for his Nurse -- Carol -- she is fabulous. I think he is the brain and she is the heart. I'm sure you will be very happy with Dr. Medsger. I just wanted to let you know my experience with him. There are only a handful of what I call "superdocs" in sclero -- and Dr. Medger is definitely one of them -- so you will be getting excellent treatment from him.

 

I save my heart to heart talks for my local rheumatologist who is an excellent sounding board for me. Also my local rheumatologist does my disability paperwork which is a huge pain for him as my disability carrier has him filling out paperwork monthly, quarterly and annually. He cannot stand it and if my appointment is anytime around the time he had to fill out the paperwork, I hear grumblings about it. The problem is that my condition is not expected to change and he hates having to write the same thing over and over and over. So the frustration is not with me but with the insurance carrier.

 

Good Luck.

 

Gidget.

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Hi, Stef:

 

I am also newly diagnosed...not with Lupus, but with Undifferentiated Connective Tissue Disease. I am very frustrated with my experiences at my rheumatologists's office.

 

I have experienced my problems for at least 6 years, probably longer. After being told by my general practioner, for years, that my routine blood tests were normal, and my problems were due to stress and lack of exercise, I found an excellent internist. She listened, and found an elevated ANA, and referred me to a rheumatologist (in October of 2008). After a series of tests and a skin biopsy, the P.A. in the rheumatologist's office diagnosed me with UTCD, although the dermatologist felt certain it was MCTD (Mixed). The P.A. also found an elevated dsDNA. I have brought up several times with the P.A. that the diagnosis was MCTD from the dermatologist. At my last visit she snapped, "Well, that is not his area of expertise!" My internist had told me that the two diseases were pretty much the same, at which the P.A. also snapped, "Well, they aren't!"

 

My visits, the first with the rheumatologist, then the last 3 with the P.A. have been frustrating. I got no responses to the answers I gave the rheumatologist on the first visit, no validation for the symptoms, as to whether or not they were pertinent, whether or not he heard what I told him, nothing. The 3 visits to the P.A. were just as frustrating. I have new issues with my skin, with which the P.A. responded with "Wow, you do have a lot of problems right now. Did you tell the dermatologist?" My thought was, of course not, I had seen him 6 weeks before and the new issues had occurred during that time. I have had excruciating all day headaches, which sometimes awaken me, and she said "Did you tell the internist?" She ran some more blood tests on the last visit, did not call me with the results, but sent me a very impersonal checklist with the remark of "Labs look great!" There was no opportunity to ask her questions, my main question is, "Why don't I feel great then?"

 

I requested a copy of my blood test results from the rheumatologist's office. There is never a real person who answers, so I left a message. I asked for the copies and left a phone number if there were any questions. I have not received the copies, nor have I gotten a phone call. I thought that I could at least do some research on my own if I knew what she had tested and what the results were.

 

I am lost right now. Do I switch rheumatologists, or do I stay and persist with my questions, etc.?

 

I am so frustrated, also. You are not alone.

 

Janet

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Stef:

 

I am sorry, I should have read on. I read the replies and saw that you had changed rheumatologists. Please disregard my answer.

 

I am very happy for you!

 

Janet

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Well Stef, it sounds like you might be on your way to a very good doctor, good for you. I'm happy for you!! Let us know how you make out, only 2 more days to go! Hope you have a list ready with your questions for him. Good to take someone else along as well to take notes for you (his answers to your questions). It's hard to remember it all when you have so many questions running through your mind at once.

 

Janet, it sounds like you might need to do another take. If you ask and say what area you are in, the ISN Team are fantastic at sending lists of good scleroderma specialists that will be in your area or as close to it as they can be for your travels. You need someone who will listen to you and help you understand what's going on with you. Doesn't sound like the one you have does that for you? Only my opinion, but I'd move on to the next one and keep looking until you are fully satisfied that he/she has your best interests at heart. Don't give up. Just start looking in the right places. Sometimes it takes longer than others. Let us know what you decide. Take care.


Sending good wishes your way!

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