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Devonsnana

Diagnosis of Systemic Scleroderma

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Hello everyone,

 

I am extremely new to this site as just received the diagnosis of systemic scleroderma last week.

 

I have had medical issues my entire 59 years of life with many diagnoses only to have the diagnosis reversed. I have been told Lupus, MS, RA. This last diagnosis came after 4 years of extreme inflammation in both arms and legs. Some days, just getting dressed is impossible. I have been told my liver, lungs, cardio are all involved. I am scared, unable to find work that will accommodate the physical conditions and not sure what to do as I am separated and husband can cancel insurance at anytime. 

 

There is no specialist within a reasonable travel time for me and I wonder what is in store now.   

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I would find a social worker in your area to help navigate the many challenges you are facing. It can be overwhelming, confusing and hard to focus on your health.

 

I would also apply for Social Security Disability and Medicare and/or Medicaid.

 

All of this a social worker can assist you with, along with any other assistance in your area that is available. Inform your doctor that you will be applying for those. 

 

I am rarely here, but reach out to others in regards to Sclero; they can give you a boost when you're scared. We all are at one point in time.

 

 

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Hi Devonsnana,

 

Welcome to these forums!

 

I'm very sorry to hear that you've been recently diagnosed with systemic scleroderma and I can understand how worried and anxious you're feeling. It can be extremely frustrating as the diagnosis can be changed and changed again (as you've described) and because of the bizarre nature of this disease, it is possible to be un-diagnosed and then re-diagnosed, as the symptoms can also wax and wane. I'm afraid this can be a pattern with many autoimmune diseases.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise, although it is sometimes necessary to travel out of state to find one. We do have two experts listed Scleroderma Experts at the Medical University of South Carolina (MUSC) and  Low Country Rheumatology  in South Carolina.

 

I've included links to our medical pages on Lung, Liver and Cardiac Involvement, to give you some more information and also a link to our Disability Benefits and Free and Low Cost Medication Programs pages, which have details of Medicare Resources, as suggested by Sticky in his post above.

 

I do hope that you will be able to find a specialist to help you.

 

:hug-group:

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you Joelf for the kind words. I am all too familiar with the diagnosis, un-diagnosis process. Unfortunately for me the MUSC is over 4 hours away. I know that the progress is different for everyone and am reading everything I can get my hands on so I am not totally blind-sided by what might come. I had never heard of Scleroderma until 2 weeks ago but am accepting the diagnosis at the present time and preparing for life changes. 

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I had never heard of Scleroderma before I was diagnosed with it either.  The problem is that no one else has heard of it either and because they've never heard of it they don't think it's that serious. The doctors are just as bad; only one has been honest enough to admit that he knows nothing about it, the rest try to blag it until I start asking questions they can't answer.  

 

I do believe that none of the GPs in my local surgery think that it's serious because if it's something they have never come across before, it can't be bad.

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I can also suggest you apply for disability and food stamps and an attorney that helps with social security; they usually won't charge you. Until you get your disability they will take 30% of what you win. You will get backpay to either the day you applied or the start of the illness. The website is Social Security Administration (SSA) on the Disability Page.  

This is a great site for information.

Now the next thing find a good therapist; it helps.

And keep records of everything.

I wish you the best outcome and I will keep you in my thoughts.

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Dimarzio,

I have the same issues here. I have been fighting for over 20 years with one ailment after another with so many diagnoses I could write a book. Treat the symptom and forget the cause seems to be the mindset of the doctors here. I have a minimum of a 1 hour travel just to the local doctors but must go further if anything is outside the normal.

The only blessing is it seems the pain is ebbing with the aid of NSAIDs.  I have cycled for years and know that it will return and each time is longer then the time before.

I wish you luck but keep pursuing a doctor to help.

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Quiltfairy,

I know the disability site well.  I will probably end up filing some day, but still hold hopes to locating a job as the pain is more bearable when I have other things to take the focus off myself.

As for a therapist, there is only a couple in the area so getting in is difficult. We are actually weighing the possibility of relocating so I will be nearing proper medical facilities. I keep records out of habit as I am finding with the last round of flare (this time lasting over 4 years), I am unable to remember like I use to, so I keep a daily journal of pains, tests, doctors. visits, feelings, and medications. 

Thank you for your kind words.

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I know how hard it is to live with this illness.  Fatigue sets in a lot of the time, I know and I take a  prescribed stimulate. At times I sleep good, other times I don't. I have been making quilts, badges and other stuff; it helps to fill the time. I live in a small town in Iowa and it is a two hour drive to see my sclero doctor; he is at UNMC in Omaha.

 

I hope you have a good support system; for me, my family tells others that I am a hypochondriac. I was promised help from them, but I should have known I would not get any help. I suggest you find a friend you can talk to as it is very important to have that support.

 

I was a professional truck driver; I have been in every state except California. My doctor is a rheumatologist, but I have been to doctors for lungs, heart, throat and memory.

 

I am just going on and on, so I will stop writing and go to bed.

Good night; I hope you get the a answer you need.

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The problem is that so many issues and symptoms keep cropping up that nobody believes that you can be affected in so many different ways.

 

I was told by my general practitioner that there was nothing wrong with me because I had had all the tests and to go away and stop wasting everyone's time. That was a month or two before the SSc diagnosis.

 

Every time I said I was having problems, they just added higher and higher doses of anti depressants until I could barely stand up, let alone walk. I've been a lot better since I weaned myself off them.

 

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Quiltfairy and Dimarzio,

I am lucky in the sense I have a good support system. My fiance`and daughter try, but wish they would without me having to ask. I have no one outside them to speak to and I just graduated with my master's in psychology so I can guarantee I will not be drugged unnecessarily. Even with all the physical problems I have decided to continue my education for licensure in my state of Georgia. With all the other medical diagnoses and being a 5 time cancer survivor I took a different look on life than many.

 

When I first posted I was scared and unsure and failed to remember my own outlook. I have my head on straight but it greatly helps blogging here with you all. Knowing you're not alone aids in increasing the ability to deal with the issues we all face.

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Hi Devonsnana,

 

Welcome to Sclero Forums!  It's a double-edged sword being diagnosed with scleroderma, after such an incredibly long struggle.  I'm very sorry you have scleroderma, plus everything else. That said, I'm glad that you finally know what you're dealing with. 

:hug-group:


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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Shelley,

Thank you for your kind words and even though a double edged sword, just knowing what I am dealing with has reduced much stress as I can now say what is wrong instead of just "They (the doctors) just don't know."

I am at present attempting to put my team together in this local area while awaiting the only Rheumatologist in the area that has any experience with scleroderma. Since I already have a cardiologist, dermatologist, orthopedist, and nephrologist, I am trying to secure a pulmonologist and gastroenterologist. I just hope that once the team is in place things will slow down a bit. 

 

Barb

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I agree with you wholeheartedly.

 

The reason I agree, when I was pregnant with my son my doctor came out to tell me it was humanly  impossible, but I gave birth 6 months later to a health baby boy.

 

What I am getting to is that you can get a second opinion; doctors see so many people, it is hard on them to see each person and when they think you are bothering them simply tell him it is your right. Walk out of his office with your head held high and with a smile on your face.

 

I will keep you in my heart and thoughts.

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