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JG07

Just Diagnosed Last Week, Oxygen, Biopsy, Disability

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I was diagnoised las week - I went to the internist yesterday - I am going to have to be on oxygen when I am ambulatory and nebulizer 3 x's a day - I have to going for a MUGA Test to check the pressure around my heart - He told me I should be resting and asked if I have short term disability - if not I should consider applying for disabilty - This is a lot of info coming at me at once - I know it will get better - but until all the tests are complete - and the right meds are given - its a roller coaster and if that MUGA test doesn't look good - then I have to go for a lung biopsy - I don't even want to think about that =-

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Hi JGO7,

 

Wow! You do have a lot of information coming at you fast. I am sure you are feeling pretty overwhelmed. But as someone said another thread, just try to take one day at a time. Please do let us know what you find out from the MUGA test.

 

Warm wishes,

Heidi

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Hi JG07,

 

Wow, you have an awful lot to deal with at once! Were you undiagnosed, or misdiagnosed, for a long time? How are you dealing with all this?


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 J,

 

I don't know how I missed this post - sorry. Wow, this is coming at you fast isn't it? Have you started the 0xygen yet? I'm really sorry this is all happening so quickly. just remember that it might all even out after time. These symptoms etc can come in flares and may level off.

 

Please let us know how you are doing when you have time, or feel up to it.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I feel that I was undiag. for a long time - as I presented with reynaurds about 5ys ago - also my ana is well over 1200 - I am waiting for the oxygen to be delivered right now - along with ther nebulizer - I don't know what to do about work - I am so tired and the thought of having to be on oxygen at work - and bring the nebulizer also - I have no short term disabilty and I am thinking about filing for disabilty . Tomorrow morning is the MUGA and the liver scan - and Thursday is my appt - I am hoping for the best I know my diagnosis will not change and I am coming to realize that things will have to change - I have heard alot about a new book I saw it on Oprah - it is basically about thinking positive and and positive things will happen -

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Dear JG07,

Sure looks like you have a doctor that is really going after nailing down what is and what isn't going on. That's great! I know there are going to be lots and lots of tests here in the beginning, but those baselines are so important, so hang in there.

 

There are several people on the forum on SSD so maybe they'll chime in. If you decide that's what you want to do, I'll find some threads where it's discussed.

 

Please let us know how you appointments and test results go. Yes I agree - we have to maintain a positive attitude and win each battle one at a time.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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WOW! That is a lot to throw at you at one time. I am on disability and I will give you any help I can. You can email your questions to me. If you have your doctor on your side I don't think that you will have any trouble getting it. It sounds like you have a doctor that really cares. That's good. I am so sorry you are having to deal with all of this. My thoughts are with you.

Nan

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Received the results from the MUGA Test today and it shows pulmonary Hypertension -along with everything else - I am waiting for the Univ of Miami Pumonary Dept to call back & Schedule an appt - My primary care physician feels that I need to be seen by them and get the best care possible - As I mentioned - I am on oxygen @ all times and this whole situation has become very overwhemling -

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Hi,

 

I am so sorry you are having to deal with all of this! Wow! Another diagnosis to add to your list. I hope you can get in to see the pulmonary doctor at the Univ. of Miami as soon as possible. It sounds like your rheumatolgist is being proactive for you, so that is good. Please do keep us posted on when your appointment is and what you learn.

 

Warm wishes,

Heidi

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Hi J,

Oh I am so sorry you have all of this going on. Getting into pulmonary dept. at Univ. of Miami sounds like a great plan. I'm glad your primary care physician is taking good care of you and directing you to the right places.

 

Hang in there my friend.....one day at at time.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I have a phone interview with Soc. Sec on the 8th - I know it is just the begining of a long road - I just hope they don't get the best of me -

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Just wanted to tell you how sorry I am that you are going through this and I know how scared you must be. Hang in there. I wish you much luck with SS. You need time off to rest and be well...not worry about a job.

Take it easy,

Jennifer

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Thinking about you, J. Hoping you are taking things one at a time. With so much coming at you all at once, that's the only way to do it.

 

Try to get copies of all of your test results from your doctors including your bloodwork. If you can, or have someone help you do it, take notes of what the doctors tell you after each visit or phone call. I have found with a lot going on at once, it really helps me to have things written down. There's no way to remember it all.

 

Also write down questions you have as they occur to you. I keep a little tablet on my night stand, in the kitchen, in the bathroom and on the table next to my recliner. I know if I don't write it down immediately, I'll forget it! Then take your questions with you to the dr. or call if they are urgent. (I also have to write down the things I need to take care of or want to do because I forget that too!)

 

I hope you have some supportive family or friends around you. It's especially tough right now when you are at the beginning of the journey. Keep posting often. Don't be afraid to ask questions or vent your anger or express your fears. We do understand.

 

xoxo emmie

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Hi J,

 

Welcome and ditto to all you have heard here. They all had great advice. I am sorry you are dealing with so much all at once. It does calm down after awhile and you can improve so hang in there. You are in a great place for information. Susie54

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Sorry to hear about the speed thing, I can definately relate being diagnosed on Jan 4. There is a tremendous amout of support within these forums, my biggest challenge is finding out how to reply to a post.

 

Hang in there, I send my blessings.

 

TJ903

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