Jump to content
Sclero Forums

Update on my Doctor's Appointment Yesterday

Recommended Posts

:emoticon-bang-head: Well, my appointment was NOT successful. I had made a list of things I wanted to discuss with my internist so I was prepared. I did not get very far at all. First, I mentioned the spleen: He said not to worry about it because it was not enlarged that much! He said my blood pressure was pretty high but attributed that to my agitation. He saw I was about to cry and said, "Don't worry, you are not a walking time bomb. Everything is fine." He said my blood work was okay and not to get all upset about the spleen. He told me to get with the gastro doctor about the diarrhea. Then he was off to write my prescriptions and that was that!!!! I did not get through half my questions. I wanted to ask about a referral to a scleroderma specialist and a referral to an ENT doctor. He gave me no time to ask anything. I cried all the way home. I am so frustrated. All the doctor wanted to talk about was my weight. He didn't even say anything when I mentioned my heavy breathing and wheezing. :crying:

Link to post
Share on other sites

Wow...I feel so bad for you. I know how frustrated you are. When I first got really bad, feet, legs swollen so bad you couldn't see my toes I had to be helped into my doctors office, and helped in and out of the chair in front of him, breathing problems, total weakness, couldn't dress myself. My doctor handed me a prescription for premarin he said, "You're 50 Lisa, it's menopause."


I told him I didn't want the prescription, and he looked right at me and said, "Then suffer." He wouldn't refer me to anyone.


Well, I did suffer for another month, ended up in emergency and thank goodness, there was a doctor there whose mother had polymyositis. He recognized the symptoms and did the bloodwork.


Needless to say, I never went back to the "jerk". I should have gone back and told him exactly what to do with his premarin!!! I was frustrated and terrified, 2 weeks after the polymyositis diagnosis, I was also diagnosed with scleroderma. I had to have water drained out from around my heart, etc. That was 3 years ago.


There's help out there, unfortunately it's up to us to find that help. I'm not a fighter and I don't like confrontations of any kind, but I found out that I had to learn to really take a stand to get someone to listen to me. Before that neurologist my husband phoned a clinic to try to get me in to a rheumatologist. I remember hearing him almost yelling at them and they stood their ground and said a 6 month wait my husband said, "She'll be gone by then," and it didn't make any difference to them. So I had my bloodwork from the hospital faxed to them and when they saw the numbers they had me in the next day. This was no thanks to any doctors or other professional, it was my husband arguing with the receptionist, and us getting the paperwork faxed through even though they said not to.


Don't be afraid to try another doctor, and above all don't give up. I had a neurologist who referred me to a rheumatologist. When you see the gastro doctor, take your questions to him and ask him for a referral. Don't give up.


Big hugs to you, let us know how things go,



Link to post
Share on other sites

I know how you feel. At my first internist visit, he told me my Vitamin D levels were too high and I need to cut back on it. I told him that they had never even been near normal before this and he pointed to the computer screen and said "See!" And asked me if I was anxious.


When I checked my paper work at home, I figured out he read the wrong part of the test but when I called back, he had figured it out and told me to keep taking what I was taking. Okay.


Then I saw the rheumatologist and she did the same thing- read the wrong part of the test and said I shouldn't take so much and then, when I said something, she pointed at the screen and said "See?" Then, looking at my expression, said that I was anxious. I hauled out my records and showed her the actual lab printout and she said "Now why is that different?"


Well- yes- how can I believe a doctor who can't read the tests and then tells me I'm anxious? Yes it makes me anxious........

Where's that cat? Oh yes (bang, bang, bang........):emoticon-bang-head:


Part of the trouble with computer records- the lab results sent by the laboratory have an explanation of the results on the sheet. I used to think that was funny (as if the doctors wouldn't know I thought) but no longer. Now I'm grateful they did otherwise I wouldn't know myself.


This is so common- sort of doctor speed dating.

Link to post
Share on other sites

Hi Tngrits


Awww I'm so sorry. I would like to say I've never experienced that, but frankly, I have many, many times. Twice now since I've been seeing my rheumatologist, I've had to start out by saying that I was really unhappy about my last appointment, that I felt rushed and didn't get my questions answered, and still had to pay the bill. Then said "Today will be different, so I hope you are ready for my list" and then whipped out the paper! Now he says, "Did we cover everything on your list?"

Link to post
Share on other sites

Ya'll made me feel better just knowing I am not alone in my frustration with the doctors. The hugs helped too! My boyfriend was so angry he got on the computer and did a lot of investigating. He found us a support group to visit next week. I think I am ready to give it another try. He talked to someone who recommended a rheumatologist she goes to and loves. So maybe there is someone in this town that understands our disease. My hopes are high anyway. I am not a quitter nor a whiner but this disease does push you so far. I have seven beautiful grandchildren I want to play with so I have to get my determination back. Thank you all for helping me. This is the greatest forum.


Hugs right back atcha!



Link to post
Share on other sites

Hello Linda


Sorry that bites! We always have such high expectations, rightly so if you ask me, when we see our rheumatologists because they're the ones we rely on to know our disease and how to treat it.


Sweet's recommendation to take charge of the consultation from the very beginning is an excellent idea. You pay so you should get your say!


Take care.

Link to post
Share on other sites

Oh Linda, I am so glad that you have a boyfriend who is so supportive...How wonderful that is :emoticons-yes:

Also, I was very relieved to read that you are going to get to a rheumatologist.


I was sorry to read that you had such an awful experience with the internist.

However, as Sweet mentioned, it's unfortunate, but many of us have been through the same...I also have. With one internist, I was really put off with her, but opted to see her "one more time". She turned out to be one of my greatest doctors, so it may have just been an off day for one, maybe both of us, when I saw her that first time!

At any rate, once you see the rheumatologist, maybe that dr will be able to suggest an internist, if you choose to try another.


In the meantime, we are so glad you have chosen us as your Sclero Forum Family!

Please let us know how you are doing!

Link to post
Share on other sites

Thanks everyone for the great advice and wonderful hugs.

Susie - My boyfriend thought your comment on him so sweet. He is working on getting me a referral and appointment to see a rheumatologist. He has been recommended from another scleroderma patient who has been seeing him for at least ten years. Keeping my fingers crossed. I will keep everyone updated.




Link to post
Share on other sites

Oh boy, I think they should put having been told "you are just anxious/overweight" or something else totally ridiculous by a doctor on the list of criteria for diagnosis. I'm not a betting woman, but I would bet this year's knitting wool expenditure that a good 90% or more of us have been through this. Frustrating? Sure is.


Your boyfriend is definitely a keeper! I'm glad too that you are going to persevere and see someone else and glad everyone else who had bad experiences before being diagnosed kept trying so we could all be here as Forum friends.


So big hugs to you, the great boyfriend and hey, since we're all in it together, how about a hug for everyone here?! (((((HUGS)))))



Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...