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New member with a lot of questions

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#1 donnaf



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Posted 29 May 2008 - 04:38 PM

Hi, my name is Donna and I was diagnosed with diffuse systemic sclerosis recently. I have been reading some of your posts, and am very grateful for you being here. It is such a relief to know there are some who understand my confusion and my fears about this disease. It is unfortunate that so many good people have to meet under these circumstances. My husband and myself hurt and be thinking of each and everyone of you.
My diagnosis began as rheumatoid arthritis. I just never felt that this diagnosis was correct. I had a lot of pain in my joints and such, but I thought there was something just not right. My fingers and toes were turning blue, my skin was very tight on my hands, up my legs and arms, and very shiney. My feet and lower legs were always very swollen and heavy.My rheumatologist would just ask me " what's wrong with your hands ? " I was not happy with him so I asked for a second opinoin. My primary care said she knew someone else but it would take a long time to get in. I told her I didn't care, and to give me her number. When I finally got in, she looked at my hands, feet and legs......did some feeling and asking questions, and made the diagnosis that quick. She had the advantage of having all my records ahead of time, and happened to have studied this disease for a couple of years over in Long Island. At the time, it was a relief just to have the diagnosis. Doctors need to really listen to their patients more.
Even though I have the diagnosis, and have just been put on a bunch of meds that are supposed to help me,I am still scared to death. I don't know what to expect next. It seems that new symptoms are popping up now all the time. I have the worst cough I have ever had. I am up all night with it. That has been going on for a month and a half now. I cough up so much phlem I feel I am going to choke to death. I have become so weak that I can't even brush my hair without taking a break. My husband puts my stockings on me because I cannot bend to put them on. I have trouble even getting in and out of the car. Some days I have to choose one thing to do and then that's it for the day. That's how weak I feel. Am I losing it ??
In reading your postings, I'm not noticing a lot of fear ion the words....Is it something you just get used to ? I mean the not knowing what will happen next...How are all of you coping with that ? any advice?

#2 jefa


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Posted 29 May 2008 - 09:34 PM

Hello, Donna. Welcome to the ISN Sclero Forums. You are not alone in your feelings, Donna - most of us have been in the same place you are at one point or another. It does become easier to cope with once you get past the initial shock. Many people find help in the information found on our Emotional Adjustment and Scleroderma page. Keep reading and posting and you will find things get a bit easier when you can share your frustration with others. Hugs to you.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Buttons


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Posted 29 May 2008 - 10:22 PM

Welcome Donna to this site, everyone is friendly and you will find lots of useful information and support.

Take Care

#4 barefut


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Posted 30 May 2008 - 12:43 AM

Welcome Donna,

As Jefa said, it does get easier and you are on the right track by coming here for support. You will find the most compassionate people here.

#5 Shelley Ensz

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Posted 30 May 2008 - 01:10 AM

Hi Donna,

Welcome to Sclero Forums! I'm glad you found us but sorry for the long diagnostic process you went through. The figures on delayed diagnosis for scleroderma are just abysmal (an average of 3 years for men, 6 years for women after the onset of scleroderma symptoms).

Yes, the fear and uncertainty really do get better, although many of us need private counseling or treatment for depression or anxiety if it prevails for more than a few weeks after diagnosis (which it often does). Developing coping skills for dealing with uncertainty is hugely important, as you've already discovered. See our Emotional Adjustment pages for more info on coping with scleroderma.

One thing to keep in mind is that scleroderma can suddenly stop progressing, or even begin reversing itself, at any time, in fact that is part of the natural course of the disease, to wax and wane. And with good medical care (and accurate diagnosis, which has to be a bit of a stress reliever, in its own way) and support, you'll probably even find yourself making some improvements! Now that is something to look forward to, isn't it?

I'd venture to say that many of us are doing better than we really expected, after we were first diagnosed. It gets easier to cope with symptoms, and a relief to find that there is still ample room for joy and happiness in life, despite everything. But it does take awhile to learn, adjust, and find our way again. We're all here for you, on the same journey ourselves.
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.

#6 Margaret


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Posted 30 May 2008 - 01:24 AM

Hi Donna ,

I just wanted to welcome you to the forum and say that I experienced the same fears when my son was diagnosed. He went downhill so fast for almost 10 months before being put on meds (Plaquenil) and his symptoms regressed. He's been on meds a year now and is doing fine. As for the coughing up phlem, have you been check for pulmunary or gastric issues? Lots of sclero pts have issues with reflux, which would be worse at night, possibly causing acid to get into your bronchi and causing inflammation. Keep posting and reading here.........and, don't believe everything you find on the internet about Scleroderma.

Take care, Everyone.

#7 Peggy


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Posted 30 May 2008 - 06:12 AM

Hi Donna:

Welcome! I know exactly where you are coming from as I was just diagnosed last year and it hit me like a ton of bricks. Like you, it took a year to finally get a diagnosis. This was after going from doctor to different doctor to different specialty before I finally was put in front of a rheumatologist doctor whose specialty is sclero and she did tests and looked at what was going on and immediately diagnosed Systemic Sclero. I also have Sjogren's, Raynaud's and recently diagnosed with Polymyositis.

Like you, I am really battling the fatigue and muscle pain. I don't get much done in a day as I'm not able to. I currently go to the hospital for 3 days each month to get IVIG infusion therapy and so far I haven't seen any results from it but from what I understand it takes as long to work for as long as you have had the disease. So with that it could be year. For not though my insurance company only approved 3 months of treatment until they see if it's working or not. This will happen when I go back to the doctor on the 23rd of this month for my quarterly check.

You are blessed in that you have your husband by your side to go through this with. I want to warn you that you will have some days when depression will hit like a ton of bricks. I have had to struggle with this as my life has changed so dramatically from what it was like before I got sick.

This forum will be there to help you any time you need it. The people here are great with words of ecouragement and words of advice on what works for them or what they think you should do. It's a great place to go to talk with people who know exactly what you are going through which is a great help.

Warm hugs to you,


#8 donnaf



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Posted 30 May 2008 - 08:43 AM

Thank you all for the warm welcome, even though none of us want to be here....Still...as someone else says....it is what it is.....I love that.Knowing that I will have all of your support, makes me feel better already. I guess we have to learn to take things as they come, and not worry too much. I'll try.! Actually, my husband is more scared than I am.I think, with everyone's moral support, that we'll get through this. Thank you all again for being there and for the nice welcome....
Warm Hugs Back To All......Donna

#9 Snowbird


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Posted 30 May 2008 - 09:06 AM

Hi Donna

I wanted to say welcome too. And yes, definitely, this diagnosis is a shocker so there's no point in me repeating what everybody else has already said.

This is a great site for support and factual information!
Sending good wishes your way!

#10 GocartMoz


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Posted 30 May 2008 - 09:36 AM

Hello Donna,

Welcome. I am sorry you have to go through this. We all understand what the not knowing is like and dealing with the symptoms can be extremely difficult. The good news is that it sounds like you have found an excellent doctor to guide you through the process. Having expert medical advice is probably the most important thing right now. There are many treatments out there that can help you with many of your symptoms. Let your doctor know about everything that is going on. It may take time but you are likely to find things will get better. As far as the coughing at night, it sounds like it might be a reflux issue. Are you on any medications for this? You might consider elevating the head of your bed. This often helps. If you have any questions don't hesitate to ask.

#11 Sweet


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Posted 01 June 2008 - 01:27 PM

Hi Donna and welcome!!

When I was first diagnosed 8 years ago, I pretty much dug my own grave. My husband and I spent many many tearful nights together. As time went by and we did research, learned more about the disease and the new treatments etc. we became less fearful. Now we are pragmatic, and try not to be overwhelmed with any new thing. We take one day at a time and try to be as positive as we can.

It does take time to adjust. Jefa gave you a great link, take advantage of it.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#12 linda lou

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Posted 01 June 2008 - 01:48 PM

DONNA,you will learn how to deal with it,i was shocked at first,i was very weak almost died in sept. as I lost alot of blood etc...But WITH TREATMENT IT TOOK 4 MONTHS before I started to feel better at all.THE ROAD WILL get easier as time goes on.just have to take one day at a time .this group of people are great we all have our setbacks at times.im thinking of you....it just takes time to adjust..linda lou I have the same as you...

#13 Cheryle


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Posted 02 June 2008 - 07:28 AM

Are you seeing a pulmonologist about your lungs?

If not don't walk, RUN to one and get an evalutation at least, hopefully he will do a CT and a pft on you and help you get your lungs in better shape. The quicker you get treatment the better chance you have of preventing further damage to your lungs.

When I first had an apt the pulmo wasn't going to see me for nearly 2 months , but I took my records and a copy of a chest X ray to his office for him to review & he fit me in for an apt even though it was a few days before holiday.

Good luck to you..