I will be going to the dr. with my son (who has Sarcs) in just a few weeks. It sounds like his dr. isn't all that experienced with Sarcs and from everything I read on this site there is so much I want to ask but not sure how to package it in a way where the dr. will understand what I am asking and why and then actually listen to me.
What tests should have been done?
What questions do I ask about his ACE levels and other test results?
He is on 40mg Prednisone - should I be asking any questions regarding the side effects to see if there are other meds to help with those? (Mood Swings, depression)
Dr. advised he take Vitamin D and Calcium and yet I have read that can be detrimental to a patient with Sarcs. I printed out the information hoping she will read it and take head.
I am also going to suggest we get his medical records since he was first diagnosed in Feb09 and I think we are going to get a second opnion to just review what tests have or have not been conducted, his results, his meds etc to verify the treatment path is on course with what it should be.
Any suggestions on this topic would be fantastic!!!!! Thanks in advance for your help.
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Going to the Dr with my son soon - any advice on questions to ask?
- By Jrs_Mom
- Posted July 3, 2009 at 10:48 am · 6 replies
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- By auntchar12
- Posted July 21, 2009 at 2:09 pm
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Dear JRSMom IN THE UPPER RIGHT HAND AREA THERE IS AN OPEN BOX WITH "FIND IT " AT THE END OF IT. I TYPED IN FROEDTERT AND CAME UP WITH RHINOKLY, MAY 28 & JUNE 4TH. YOU MIGHT GET IN TOUCH HER,
THE POST DIDN'T MENTION THE NAME OF DR JUST CITY AND PLACE YOUR SON IS ON MY HEART& I PRAY ABOUT HIM & YOU. THIS IS THE HARDEST JOB YOU WILL EVER HAVE CHARLOTTE OR AUNT CHAR GOOD LUCK. AUNTCHAR
'
- By Jrs_Mom
- Posted July 21, 2009 at 10:27 am
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Ok, so I was finally able to meet my son's dr yesterday and I have to say I was disappointed but not surprised. She asked the normal question, how are you feeling? My son describes to her the chest pains he continues to have, shows her where they are, she looks puzzled, asked him if he strained himself working out. She pushed on his chest a little to see if she could make him wince and he said No, it was a deeper pain, one that makes it hard to breathe at times like someone is squeezing his lungs and he has to focus just to get a breathe in. He then describes the awful headaches he has been having and mentions he cannot sleep. She says, yeah, that can happen with Prednisone. Your blood work came back NORMAL so we can start weening you off of Prednisone, starting tomorrow.
Ok, wait a minute, he is describing pain he continues to have and because he can't sleep because of the Prednisone and because his blood work came back normal, whatever the hell that means, she thinks he is doing much better and can be taken off of his meds. I asked what she was testing or and she said his white blood cell counts. Does this make any sense? He has only been on it for 3 weeks.
I asked her a bunch of questions about his ACE levels and she said they don't test for it all of the time but when I asked what his was she couldn't tell me just that it was elevated when they did test it. Then I asked about Vitamin D and actually had the information from this site with me and she read it and I am sorry but she is of a different nationality and speaks broken english and when she read parts of it she put the emphasis in the wrong place on some of the paragraphs and didn't pay attention to commas and such so it changed the meaning of the paragraph to her liking. She told me none of the information I gave her made any sense. I asked her what Stage he was in and she couldn't tell me. I asked her how many patients she sees with Sarcs (she is a pulmonologist) and she said, "I see alot, that is my specialty" and yet her bio from those little handouts says that asthma is her specialty and no mention of Sarcs at all. She looked annoyed when I had all those papers with me and started asking questions but now I am pissed. My son has agreed to let me have him see another dr for a second opinion. She just seems so nonchalant about the symptoms my son was speaking about. She also sent him to see a Ear, Nose, Throat Specialist because he was complaining of headaches. We go down to him and he asked a bunch of questions, kind of to say, "What the hell are you doing here?" He questioned why he was put on Prednisone only 3 weeks ago if he was diagnosed in February and seemed puzzled. He looked at his eyes, ears, throat etc and said, "I don't think anything is going on here" and so we were done and got absolutely no where. On our way out my son signed a release form to get his records sent to him and I am looking for a damn doctor for a second opinion. Someone on this site had mentioned once that her husband sees a dr. at Froedtert in Milwaukee. If I could find that person and get the dr's name again I would be absolutely delighted and very very thankful. Thank you all for listening to our saga.
- By Jrs_Mom
- Posted July 4, 2009 at 9:01 pm
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My son has had a ton of x-rays, then a Pulomnary function test and then the biopsy of his lungs to diagnose it in his lungs originally, his latest diagnosis is that it has spread to his sinuses and is in his blood marrow but I think the dr. is going solely based on the symptoms for the sinuses and a low white blood cell count for the bone marrow, which, if I have read correctly from others on this site may not be a true indicator of what is going on. My son had one more pulmonary function tests the day he started his prednisone so they have a baseline. His primary doctor treating his sarcs is a pulmonologist. I only know what my son has told me so I think I captured it all correctly. I do know he has had a ton of blood work done and not sure what all his levels are for this or that but I will be asking for sure when we go to the dr. together. I won't kill the dr. I just have a lot of questions.....
- By nitt121
- Posted July 4, 2009 at 11:03 am
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Please don't go in there killing the Dr. LOL! I will tell you each person is different. My boyfriend took both the calcium/vitamin D and never had a problem. I can say he started with 60mg of prednisone and later found out it was pointless since his sarc is neuro. Where is your son's sarc is what you want to know I would believe. Have they taken and MRI/ breathing tests/ biopsy, etc? How was he diagnosed? Then what kind of Dr is he seeing? I say this because a pulmonary Dr. can offer much advice if the sarc is not affecting the lungs.
- By ellj
- Posted July 3, 2009 at 7:04 pm
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http://www.inspire.com/groups/stop-sarcoidosis/discussion/ace-level-at-161/
See priscurls post on blood work....Good info
- By ellj
- Posted July 3, 2009 at 3:47 pm
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Hi,
"What tests should have been done?"
(Answer to address multi organ sarc-personal experience: Blood work-ACE, SED, HLA B27 for genetic auto immune factors, CBC; Scans-PET or CAT, PFTs ;urinalysis; biopsies; echo cardiagram; eye exams. The group will likely have others.
"What questions do I ask about his ACE levels and other test results?" Just ask what each one means. Get a copy of the test results. You can go to this site to look up each test later:
http://www.labtestsonline.org
"He is on 40mg Prednisone - should I be asking any questions regarding the side effects to see if there are other meds to help with those? (Mood Swings, depression)" Yes! Diazepam helped me tremendously.
Also ask why the mg is felt to be the best dose; is it working and how is that determined; when or if the mg will be tapered; are there any other drugs that might assist.
"Dr. advised he take Vitamin D and Calcium and yet I have read that can be detrimental to a patient with Sarcs. I printed out the information hoping she will read it and take head." Yes, bring the info. And remember, it is a patient right to know why a drug is being administered. You might ask 'In light of all this research, what is your basis for prescribing these drugs?"
"I am also going to suggest we get his medical records since he was first diagnosed in Feb09 and I think we are going to get a second opnion to just review what tests have or have not been conducted, his results, his meds etc to verify the treatment path is on course with what it should be." WONDERFUL IDEA.
One thing I'd like to mention: My husband comes along to every appt. We always discuss all the questions (his and mine) in advance of the appt. Why? Because at first, when I was just barely coping with the idea of having a chronic disease, when he'd ask a question for me or answer one for me, I got mad. Mad, because I felt I was being treated like a child. So his job at appts is to be certain we asked all our questions and to take notes.
Good Luck and be sure to let us know how JR's appt went. Hugs to you for being such a loving Mom.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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