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mydaddy

My husband tested positive for scleroderma

33 posts in this topic

I'm so glad I found this site. My name is Lydia and I am here with lots of questions and concerns.

 

My husband has not yet been diagnosed but he tested for scleroderma and came out positive. I would like to learn more about the disease and how it affects a person; we went to the rheumatologist and they ran a lot of tests. We will get the results back in 2 months. I'm so saddened by this, because I suffer from lupus and now him. He is a wonderful husband, the best anyone can ever ask for. He has been having gastro problems. I guess what I'm asking is will he get better? I've heard horrible stories and read a lot of bad stuff on the internet.

 

Can someone please give me some hope in helping him. Thank you

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Hi Lydia,

 

Welcome to these forums to you and your husband!

 

I'm sorry to read that your husband has tested positive for Scleroderma. However, a positive blood test is not necessarily conclusive; a few of our members have tested positive in blood tests but have never gone on to develop the full blown disease. Also blood tests can be negative and yet a person can have many clinical signs and definately have Sclero, so you can see that a correct diagnosis is difficult.

 

The very worse thing to do is to read alarmist information on the internet....I know, I've done it!! :rolleyes: ;) The very best thing is to glean information from a site such as Sclero.org, so you've already taken the first steps to helping your husband by finding these forums and joining our community. Also are you seeing a Scleroderma specialist? It's very important as sadly a lot of rheumatologists simply don't have the expertise to deal with this complex disease.

 

I've included a link to Gastrointestinal Involvement which I hope will be helpful to you. It's very difficult to speculate the course of the disease as it tends to affect everyone differently and although I enjoy telling my doctor how to do her job, I have no actual medical training apart from a first aid certificate! ;)

 

Do please keep posting and let us get to know you and your husband.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Lydia,

 

What a shame your family is having to deal with the possibility of two autoimmune diseases at once. I'm glad you found this site. We not only have a lot of reliable and up-to-date information on scleroderma, we also have a fair amount on Lupus.

 

Scleroderma is such a funny disease. It can be funny, as in the ha-ha :lol: sense, especially here on the Forums (we poke a lot of fun at ourselves!). It is also a funny disease in that it is hard to diagnose, hard to make much more than a 'best guess' prognosis, and can be hard to treat in some cases. It's a chronic disease with no cure, but (big but!) there are ever-improving treatments for the symptoms and complications that might arise and every chance that your husband will enjoy a good quality of life and a long one at that.

 

If you go to the scleroderma medical pages, there are sections for each of the organ systems that might become involved, with symptoms, tests, treatments and in many cases, helpful tips. However a good place to start is in the Support Section and the topics you will find under Emotional Adjustment. Your husband might not ever develop much more than gastrointestinal problems, but you will both be dealing with the emotional fall-out of his possible diagnosis right now.

 

So, a hearty welcome to the ISN Forums! Others will be chiming in to welcome you. I hope we see you around often and be sure and let us know what you hear when you get the results back. In the meantime, you have all my best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thank you so much for the warm welcome. It really touches my heart when other people care so much like in these great message boards. Thank you for your replies it answered all the questions I had.

 

I really need to learn my lesson about going to the internet to get information about a disease. I scared myself to death after I did the same thing with my Lupus. It contributed to my depression for about 3 years. I'm doing much better now. I will let you know about my husbands test results. He has a lot of upcoming appointments:. pulmonary breathing test, cardio tests, gastro, and even an eye doctor. His main concern right now is his gastro issues he has an appointment on the 27th and has been in pain for the last week. i can't wait for that day to come as I hate to see him in pain.

 

Thank you very much for your quick replies, it means a lot.

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Hi Lydia,

 

Welcome to the sclero forums! I'm really glad you found us. I'm sorry about your husband and your diagnosis. I see that the others have provided you with a few great links. I hope they are helpful to you both.

 

Again welcome! :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Lydia

 

Welcome to the forums and maybe your husband might wander in one day?

 

As with Lupus, the outcome for people with scleroderma varies, some live long and prosper others crash and burn quickly. You have a chronic illness so already know the importance of attitude and making the most of things, now you have to do it for two!

 

If I've said it once I've said it a thousand times...there's still good life to be had after scleroderma, it's just that life looks nothing like you thought it would but that's not necessarily a bad thing!

 

Please let us know how things go, test results and so forth...take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lydia,

 

Welcome to Sclero Forums! I see you are already getting well settled in. I think you will find that all the positive coping skills you have developed to deal with lupus will come in just as handy for your husband's illness. It's a dual role of both being patients and caregivers, but in our household we find that works out beautifully. Both of us have a lot of understanding when the other is under the weather, both of us are very flexible, and both of us keep an eye out for how we can help each other. We make deals to never book overlapping doctor appointments so that we can each be there for the other. We both do everything we can to simplify our lives and add enjoyment so that we wring the most out of each day. In short, it all works out very well, and I think it's miles ahead of the couples where one spouse is totally healthy.

 

For example, neither of us is apt to want to go skiing or mountain climbing. Both of us keep an eye on the schedule so that we have ample time to rest. Whereas with a totally healthy partner, there is always a big energy gap which can make things a bit more challenging to negotiate, in many respects.

 

In short, overall, despite the myriad challenges, you can use this as an opportunity to grow closer together and to always leap at every opportunity to show love and appreciation for each other. Keep that in mind while you both undergo his strenuous testing.

 

Plus, just think, with all your impending doctor visits between you, you will never have to order a magazine subscription again, as they abound in the waiting rooms. :emoticon-dont-know:

 

Here's a group hug, for both of you.

 

:emoticons-group-hug:


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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Wow, Shelley that really brought tears to my eyes, thank you so very very much for your words; that's exactly what I need people like all of you on this board that has giving me strength to go through what's ahead. I really couldn't believe when they told my husband that his test came out positive. I've had lupus for the past 20 years, and he has been there for me through thick and thin. We have 3 grown kids and he has been the best father and husband.

 

You have a special way of putting things into words.... your words really touched my heart and I'll never forget that.

 

Thank you again, Lydia

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Lydia,

 

I am sorry about your husband, I totally know how you and He are feeling. I have been diagnosed, undiagnosed, and rediagnosed just the other day with Limited Scleroderma. It is frustrating and overwhelming at times. If there is anything I can do to help I'm just a holler away. I have been so happy to find this site; the people are warm, understanding and full of knowledge!!!

 

Regards,

 

Marsha

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I just don't understand that because a disease is rare they give it so little attention; I don't think it so rare as they say; more than 300,000 diagnosed with scleroderma and more than 1 million with lupus doesn't seem to be rare to me. It's just mind boggling how a "Rare Disease" can have such little attention.

 

It's about time they did something about these auto immune diseases; I just can't believe so many people are suffering with all these symptoms that their bodies are subject to, because of a disease that they don't understand and also what causes it... if they dont know what causes it how in the world are they gonna find a cure for it? I've had my disease LUPUS, for over 20 years and I'm not complaining because it has been so mild that I've never had a symptom except for a rash on my arms, but my point is..... why is this disease so complex, why can't someone out there find something that will take us in th direction in finding a real cure?

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I'm adding my welcome too! GI involvement is my main symptom as well. I tell my friends when they ask how I am, "as long as I follow the rules of my diet, I feel great", but I still get attacks and frustrations out of the blue. If I didn't follow a strict diet specific to my particular situation, I would be frustrated and sick more often. I am still new in my diagnosis as well, and there is a wealth of info here. Even try searching old posts for subjects of interest. Wish you and your husband well! :VeryHappy:


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi Lydia,

 

How did your husband's appointment with his GI doctor go yesterday?

 

I do hope that the doctor could prescribe him something to help with the pain that he's been experiencing and that he's feeling better.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Lydia,

 

A little slow in saying hello here. So pleased you found this site and have such great support from so many.

 

My daughter was diagnosed with scleroderma twelve years ago at the age of 26. It is very difficult being a family member. Your support will be paramount.

 

Please let us know how things pan out.

 

:emoticons-group-hug:

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Hello again, my husband's consultation went well. They mainly asked him about all his symptoms and booked him for an endoscopy on Monday.....so I will definately let you know about the results.

 

Thank you all so much for the warm welcome.

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Hello Lydia

 

Hope your husband's endoscopy goes well tomorrow.

 

I have often wondered how they'll ever cure a disease when they don't know what causes it...

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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That's exactly what the problem is: they don't know what causes it so they don't have a cure..... sad but true. A lot of doctors act like they know everything about these diseases but the truth is they don't have a clue about them at all..

 

Medication is their best tool.. A cure would be the best thing out this year, for scleroderma and all these autoimmune diseases including all types of cancers....

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My husband's endoscopy went well today.. they found nothing everything was clear.. happy about the results but now we're back to square one. He's 48 years old, now they want to do a colonoscopy to check for colon cancer.. I'm getting scared about this one. I hope they don't find anything.. this is really making me nervous sorry.....

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Hi Lydia,

 

I'm so glad your husband's endoscopy went well today.

 

Please don't worry too much about the colonoscopy (I know that's easy for me to say! ;)) It may be all clear for that procedure as well; I do hope so. :emoticons-i-care:

 

I shall be thinking of you and your husband and hoping for a really good outcome.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Lydia,

 

Another belated welcome to this forum. Glad your husbands endoscopy went well.Having had four colonoscopys in the past, I can quite honestly say the worst thing is the bowel preparation, the actual procedure really was not too bad at all because of the sedation.

 

So please try not to worry too much and reassure your husband too.

 

Hope all goes well

 

Sandy B

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Wow, I am so impressed by the support I'm getting on this board; it's incredible how people that I have never met could be so concerned for us... but I feel like you're all my family.

 

Your words are keeping me strong for my husband and I will forever be grateful; his colonoscopy is booked for the 22nd of May..... thanks to all wishing you well.

 

Lydia

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Late welcome here as well Lydia, and I'm in the "had more than I want to count colonoscopy camp" and the prep is bad but the procedure is all right. Just don't let them talk him out of the sedation, it is a mild form and makes the procedure so much easier. I was never offered anything prior to my last two and wow what a difference. It's over before you know it and no pain with the sedation.

 

I know there are no guarantees, but with all the ones I have had nothing has been found except for Diverticulitis in my case, so here's hoping that it comes back all clear for your husband as well!

 

Sorry for the late welcome and glad you found us!

 

Jean

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