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#1 Kelly Jo

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Posted 12 July 2007 - 01:51 PM

Hello!

I've been reading this forum for several days now and now looking for some advice. Four years ago I began having aches/pains, etc. Was diagnosed with fibro, although I do not have any of the pressure points mentioned for diagnosis. The problems have progressed and now I am in constant pain with very tight muscles (aching and burning) and tight/shiny skin on my legs. Trouble swallowing, choking, swelling in legs and feet, and I have Raynaud's. I also have hypothyroidism and have been on meds for that for 4 years.

In February, I changed to a new rheumatologist with hopes he would be able to help me. He also mentioned that sclero was a possibility. At that visit, he said my thyroid was still just a bit off and upped my dosage and said we'd wait 4 months to see if that helped as all this could be caused by thyroid. I went back in June and he said thyroid was normal and he felt I probably had scleroderma. He then said he'd see me in another 4 months and see if I felt any better. He just wants to play the wait-and-see game and I'm miserable in the meantime. I am seeing another doctor tomorrow and want to know what tests I should tell him I want done to see one way or the other if this is sclero.

I don't want to seem pushy to the doctor but I need some answers and some relief soon. Thank you in advance for any suggestions you might have for me!

#2 nan

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Posted 12 July 2007 - 03:31 PM

Welcome to the forum! There are tests that should be done if you have been diagnosis with scleroderma. These are the ones my rheumatologist did: lots of bloodwork-I am sure your rheumatologist has already done the appropriate ones. Pulmonary Function tests, chest x-ray, and echocardiogram. I also had a gastric emptying study done. It sounds like you might to see a GI doctor and he might want to do an upper endoscopy. My rheumatologist feels that you should be pushy and vigilant if you have been diagnosis with scleroderma. I am sure that the moderators on the forum can do a much better job of explaining what you should get done. Good Luck and let us know how things go. Hopefully, the new doctor will be more able to guide you in the right direction. I send good vibes your way. :D
Nan

#3 peanut

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Posted 12 July 2007 - 04:10 PM

Hey Kelly Jo,
Welcome I'm glad you've found us. I've been diagnosed for almost a year now and just got back from my rheumatologist who said the said thing - lets wait and see. This is regard to what treatment plan I'll receive next. The reason I bring this up is sometimes I think that for as much as we need relief they need to be more conclusively sure before they make a decision. There aren't a lot of definite answers with Scleroderma and sometimes doctors are cautious in order to make the best decision or diagnosis possible.

The typical tests are: ANA blood tests, physical exam, biopsy, PFT/CT scan (if you have lung issues).
Are your fingers sensitive to the cold - turn blue?
Do you have crazy heartburn?
Is your skin hard or tight?

I hope you find some relief soon,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Sweet

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Posted 12 July 2007 - 05:22 PM

Hi Kelly Jo -

Welcome to the sclero forums. I'm sure sorry you are having such yucky symptoms. I would suggest you ask your rheumatologist for plaquenil while he/she is doing the "wait and see" game. It will help with your fatigue and your pain and will help to keep the progression of the disease at bay in the meantime.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 WestCoast1

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Posted 12 July 2007 - 06:13 PM

Hey there Kelly Jo~
I am glad that you posted. Welcome to the Forums. I am sorry to hear that you have not been feeling well.

We have all been where you are at one point...and many of us still are. The "waiting game" is so frustrating, that will never change, but you come to accept it as part of the illness as it comes and goes and the doctors send for different tests.....and again the wait begins. It gets easier to be patient. It can take days, months or years to see the "whole picture" of Scleroderma.

It sounds like you are on the right track with a Rheumatologist. The tests he/she may already have done or need is the Autoimmune Panel....here is a link to the ISN that contains a list of antibodies Along with your symptoms, these can give your doctor clues as to what to look for.
 


*WestCoast*

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#6 jefa

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Posted 13 July 2007 - 04:30 AM

Hi, Kelly Jo, and welcome to the ISN Sclero Forums. This is a great source of information and support as I am sure you will soon find out. I am sorry to hear about your suffering. My problems have been around for four years as well, and it is only recently that scleroderma is getting written down on the papers, though I suspected it much sooner. Peanut has given you a general list of the tests and procedures you may be up against. The tests Erin has provided a link for are good for screening but many of us have negative results, so they are not conclusive. "Wait and see" can be a valid treatment option for scleroderma, but that doesn't mean you should sit back quietly. Arm yourself with as much information as possible and stick up for yourself. I have found that it is better if I write down all of my questions and notes before I go to the rheumatologist so I remember to ask everything. I even have a simple drawing of a person on one of the pages of my notebook with troubled areas circled in red. On one visit, my rheumatologist just took the notebook from my hand, and copied from it. In the medical section we have a page on Scleroderma Symptoms Checklist.

Scleroderma (sklare-oh-derma) means "hard skin." This complex disease involves tightening and thickening of the skin, blood vessel damage, inflammation and immune system changes.

 

Hope this is helpful to you.


Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

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#7 Elehos

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Posted 13 July 2007 - 05:12 AM

Hi Kelly Jo,

Pushy? Pushy?? Remember that you're not being whiny when you need to find out what's going on with your body! The old saying, "What you don't know can't hurt you" is untrue since you can't deal with or fix what you don't know. More often than not we find that we have to be extremely persistent with so many doctors or they won't figure out what we need to know. Welcome to the board, too, but like the others, I wish it were under different circumstances.

Best wishes to you,

Elehos