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Karenlee

Test results, consultation questions

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Hi all. I am going to my Rhumetologist next Wednesday for a consult on all of my testing that has been done over the last 2 weeks. So far I have had blood drawn, x-rays, and a doppler (sonogram) on my hands.

 

My concern is that I will not ask the right questions, as in what type of CREST, what can I expect in the future, treatments, etc. I am asking for your advice on what to make sure I ask as I have a tendancy to not say much, and think on the way home "why didn't I ask....."??? "what did he mean by....???" etc.

 

Any input you could give me would be greatly appreciated.

 

Thanks!!

Karen

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Hi Karen,

 

It can be so nervewracking to go get all the test results. Hang in there!

My suggestion is to sit down and write out a list of all your questions and bring it with you to the appointment. As to the specific questions, I'm not sure myself, but I'm sure you'll get some good suggestions from the others on the forum. It's also a good idea to write down any symptoms you're having or have had in the past, no matter how unrelated they seem to be, you may realize you forgot to mention something last time.

When I saw a rheumatologist last year, I didn't mention that I could not open my hands all the way, and that the skin was tight. I had just been diagnosed withmorphea, and at the time I didn't realize the significance of that symptom, I was so focused on other stuff.

It's also really important to remember not to leave the lists in your car or your purse, but to actually take out your lists and discuss them with the Dr. :)

I really hope everything goes well for you on Wednesday.

 

Take Care!

Bunky

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Hi Bunky.

 

Thanks for the advice. I will make sure to make a list and bring it with me. I plan on writing everything down that he tells me as well. My memory really seems to be on the fritz lately. Not sure if its because of the disease or the stress from being so preoccupied with thinking about the disease.

 

Karen

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First of all, start making a running list. By the time I get to my appt. I have a full page of questions. Not sure it's always appreciated, but at least I don't wonder about something after I leave.

 

I guess if it were me, I'd make sure I understand what they really think you have. Is it CREST? Or is it Diffuse Sclero. What meds should you be on? What changes should you keep an eye out for? Are there any meds or over the counter meds or supplements you should stay away from? What can you do to try and slow the progression? Tell him/her about any little symptom you are having even if it seems dumb to you.

 

Good luck!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Guest SADIE

Karen, I agree with Bunky, Write down all the questions you can think of. Maybe even take someone with you for the appt if thats possible. Having a second set of ears is good. I wish I could help you more with the CREST questions but I have Diffuse.

You're in my thoughts.

Sadie

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Hi Karenlee, If it were me I would want to know:

 

Did my test results show anything

What do you think I have, and can you explain how might it effect me

Do I need any treatment and what treament options are there.

Do I need any more tests and if so why

How often do I need to be followed up

 

Always ask the doctor to explain anything you don't understand - I think they often forget that we don't all have their level of understanding how the body works or of medical terminology!

 

hope it goes well

Lizzie

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Hey Karenlee,

Hum. Regarding treatments ask... how do I know if I'm improving or if the treatment is working? How long before I should expect to see results? What are side effects?

 

Ask about a pulmonary function test (PFT), CT scan and echo. These are typical annual run of the mill test for us scleros. It's good to get them early as a baseline so you can see if you really are worsening or not.

 

If you're having hand issues perhaps you could ask about hand physical therapy. It's time consuming - mine was 1 hr 3 days a week but it may be worth it to you... it was to me.

 

I hope this was helpful,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Bunky, i was diagnosed with morphea also, I was wondering about what you said earlier about your hands not opening completely and you didn't realize at the time the significance of that. I dont either. What does that mean? Sharon

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I suggest you either bring someone with you who can help with the questions OR write them down as you think of them on something you won't lose between now and then. Many patients arrive at a Dr's office with notes ... I do both so that I don't forget anything :o)

Robin

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Thanks everyone. I've been keeping a running list of questions (so many of them my head spins). I hope he stays patient with me, he seems like a decent doctor so I'm sure he won't have a problem with the barrage of questions.

Part of me wants to know everything and part of me wants to stay blissfully ignorant out of fear although I am aware that is the coward in me talking. :(

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Hi everyone. Well today is the big day. Thanks for all your suggestions regarding questions. I have 2 pages worth, so that should keep my rheumatologist nice and busy for a while :lol:

 

I have a knot in my stomach this morning, dreading the outcome of the test results. Came pretty close to re-scheduling, but I think of my Dad when he was ill, and how brave he was. Went to every appointment and didn't complain, or look for pity. I am trying to pull from that and use him as inspiration although I have to admit it's pretty hard to do.

 

Karen

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Ok well here goes.

Unspecified connective tissue disorder with limited crest. I have REST without the C. They are starting me temporarily on Medrol for one month, until I see an eye specialist that has to give the ok to put me on Planequil Sulfate. Am also going to have a chest CT in the interum. My Scleroderma is limited as well.

My rheumatologist said that when I do get on the Planequil, that it will take 6-8 weeks before I see/feel any results.

He also thinks that the Dovonex that was prescribed by my dermatologist will not do much to improve the white spots.

 

Karen

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It looks like you kept notes of what they told you as you do a better job than I do in remembering all they tell me. I hope you feel better now that you have had your questions answered and feel better about what you know is going on.

 

Warm hugs,

 

Peggy

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Guest SADIE

Karen, Thanks for the update. You will be in my thoughts. Keep us updated on how you're doing. We are always here for you if you need to chat or ask questions.

Sadie

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