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#1 ktvtfan



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Posted 10 November 2010 - 07:43 AM

Ok. So I'm new to the forum.

I'm not typically the person who joins forums or chat groups but I'm needing a place for information and support. I've been through a mess of medical issues over the last year or so.

My main symptoms are extreme fatigue, muscle weakness, pain in fingers and toes, and ANNOYING itching mostly on my hands and wrists. I've been bounced around from specialist to specialist with no answers.

My rheumatologist says I "might" have an autoimmune illness but all my other doctors are convinced especially after a week long stay in the hospital with distended abdomen; positive ANA and SCL-70; swelling of the hands; feeling of burning and tightness of my skin and shortness of breath. I also have red swollen fingers with hard itchy brown patches.

Scans of the lungs are fine but PFT showed a little abnormality in the volume possible due to muscle inflammation. The only other clinical findings have been enlarged liver/bile duct, dilated intestinal loops and inflamed bladder. I also have chronic right flank pain; I'm assuming from the enlarged bile duct.

I finally took it upon myself to find a Sclero specialist and I'm going for that appointment on Nov 18th. I'm so excited to hopefully finally get answers and treatment. I'm to the point where I don't want to do anything except sleep. I have no motivation for anything and my work and home life is suffering as a result. I don't think that anyone around me understands what I'm going through.

I am only 32 years old but I feel like I'm in an 80 year old body. I watched my mom struggle for years with RA and fibromyalgia so I know the effects of autoimmune illnesses but at this point I just want a treatment plan to hopefully help me get through my normal activities without feeling this way. I also should mention that I have a terrific husband who tries to be supportive but he just wants to "fix" me and gets so frustrated with doctors turning me away not sure of what the problem is that he tends to shut down so in turn, I try not to complain or even talk about whats going on with me. I'm just SO FRUSTRATED!!!

#2 Shelley Ensz

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Posted 10 November 2010 - 08:09 AM


Welcome to Sclero Forums! I'm sorry you are having so many health issues. At least you've come to the right place, where we can understand you. We all know how frustrating it can be, trying to get an accurate diagnosis.

I'm not a doctor (I have no medical training at all), but it sounds to me like you made a very sensible decision to be evaluated by a scleroderma expert. I used to say I felt like I was "80" and then I realized that my 93-year old friend was running circles around me, so now I don't know how to describe it. Like, 115? :huh:

Well, I just wanted to say hello, and I'm sure many others will chime in to greet you. I know it's rough, but hang in there, okay?

Warm Hugs,

Shelley Ensz
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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.

#3 Sheryl


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Posted 10 November 2010 - 08:33 AM

ktvtfan, welcome to our clan of wonderful autoimmune, fatigue related people. Please keep us informed on your well being and what your Scleroderma specialist has to tell you on the 18th of this month. Take the time now while you are just recovering from your hospital visit to get a folder and keep all your medical records together. When you see several different specialists they sometimes like to know what the other one is doing for you. They also like to have copies of results and types of medication that you take or may be wanting to take in the future. Some of my doctors haven't always concurred with my other doctors in the past, so keeping copies of everything for your self helps you to stay on top of things. If you have questions fire away. One of us or many of us will give you our 50 cents worth, to take or leave if desired.
Strength and Warmth,

Sheryl Doom
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#4 debonair susie

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Posted 10 November 2010 - 09:41 AM

I am here to greet you as well, ktvtfan. I am hopeful that as you are awaiting your appointment on November 18th, you take advantage of reading topics which have a pertinence to your health symptoms. That way, you will be helping yourself, as well as on your way to becoming your own advocate. May I also suggest that, if at all possible, you take someone with you to this first appointment, so that each of you may glean as much as you possibly are able, from your dr visit.

We all are able to empathize with your present feelings, as so many of us have experienced what you are now experiencing: the need to know what is happening so your symptoms might be treated. Yes, the frustration can become overwhelming, particularly when dealing with such symptoms as you spoke of.

As Sheryl mentioned, it would serve you well to keep track of all records, regarding your health findings. Armed with this, knowledge becomes power, which is beneficial not only to you but also any/all doctors you see, from this point on.

Please know that this is a very special community of very caring supportive, as well as knowledgeable folks of varied ages, who have a wealth of experiences to share. We are a Family and we think of ourselves as nothing less, so come here and share, support and continue to let us know how you are doing.
Special Hugs,

Susie Kraft
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#5 Patty Arche-Hueck

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Posted 10 November 2010 - 10:33 AM

ktvtfan,welcome,i am also fairly new to the site and scleroderma,and like you really scare,because I do not know much and because I was always active and now I am not.my hubby is wonderful,and it help me to take him with me to all my appointments,please kee us u t date with your specialist appointment,and if you need any help ,do not hesitated to contact us,i find this group very helpful and very informative,get a very soft hug ,Patty
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#6 Sweet


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Posted 10 November 2010 - 10:54 AM


Welcome to our family. I'm sorry you are having so many symptoms. I'm really glad you took the bull by the horns and scheduled to see a specialist. That's the way to go. I'll look forward to hearing about the outcome.

Again, welcome! :flowers:
Warm and gentle hugs,

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International Scleroderma Network (ISN)

#7 enjoytheride


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Posted 10 November 2010 - 11:42 AM

ktvtfan- you are doing so much better at getting those ducks in a line than I did. I went to my same ol' doctor with complaint after complaint with no resolution for years. He finally sent me off to a rheumatologist, I think to settle a disagreement with a surgeon as to what I had.

Since then, it's been a process but I have gone from needing a string of places to sit every 20 feet as I couldn't walk farther than that in one go to being able to walk as much as I need to get chores done and every walk a couple of hours once a week for fun. Quite an improvement.

I'm sorry your husband is also having difficulty with your situation- it's hard for a person who doesn't "feel" what's going on to deal with it. Hopefully he will find his way through this process too. Bless him for wanting to make it all right for you.

I know the "80" year old feeling too. The worst point was when I couldn't get out of chair without several tries, I was seriously looking at one of those chairs that sort of spit you out that are advertised in magazines.

Keep us in mind if you have any questions - there are some wonderfully informed people on this site.

#8 Lynnie


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Posted 10 November 2010 - 01:22 PM

Hello there! I agree and sympathise with your frustrations! In the early stages of waiting for the diagnosis to be given, I fully understand the feeling of being stood in the middle of a crowded room screaming will someone please shut up and listen to me I'm not right, will someone throw me a lifeline!

It's the most frustrating place to be in the whole world believe me and the majority of "the family" on here have been there and got the sweat shirt!

When you see the new rheumatologist tell him how you feel, symptoms you have, write a list of things you suffer from and questions you want answers too. It's to easy to end up forgetting things, getting tongue tied and coming away saying "Oh I wish I'd asked this and that"! Go prepared.

If scleroderma is diagnosed you will be in a state of turmoil and concern, what next? I'm frightened, were do I go? Who can I ask? We have ALL felt that and still do at times! That's why we are all here, we've all been "new" and walked that uncertain road.

But the people on here have many different issues relating to autoimmune disease. The majority are scleroderma sufferers. We've all wanted answers and when you are given them sometimes it's not what we would wish for, but a positive attitude and taking control in your own way makes things easier to cope with.

I would be lying to you if I said it is easy it isn't but you will learn not to beat yourself up and in a loving way educate your loved ones and friends to except you and your limitations as you yourself will in time.

Roads are for journeys not destinations. It's up to you how you walk yours, but we are here to help you okay?

Hugs and good wishes. Good luck for the 18th keep us posted.

Lynn in England, UK

#9 Joelf


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Posted 11 November 2010 - 01:42 AM

Hi Ktvtfan

First of all a very warm welcome to the forum to you.

I'm very sorry to hear that you've been feeling so poorly and have so many health issues to deal with in the past year or so.

However, it's excellent news that you have an appointment with a Scleroderma specialist on the 18th November, as I do think that one of the worst aspects of this bizarre disease is not actually having a concrete diagnosis. I was very fortunate in that I was diagnosed fairly quickly by a specialist team of experts, who had seen many similar cases of interstitial lung disease and were able to recognise Scleroderma. Once diagnosed I actually felt much better and very relieved. I do hope that the same will apply to you.

Do please keep posting and let us know how you get on with your appointment; I shall be thinking of you. :flowers:

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#10 Amanda Thorpe

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Posted 11 November 2010 - 02:49 AM

Hello Ktvtfan

Welcome to the forums! Seeing a scleroderma expert is such a good idea and hopefully you'll come away with some answers.

Take care and keep posting.
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#11 Jeannie McClelland

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Posted 11 November 2010 - 12:27 PM

Hi ktvtfan,

Boy, I'm late in chiming in with a hug and a welcome! I'm glad you've joined and I hope we can help you with good, reliable information and support and understanding.

It's pretty tough to get others to understand how we are feeling, especially when we look healthy! We have a section on Emotional Adjustment because not only do we have to cope with our own feelings about our illness, but we have to cope with how it affects friends and family. And, as you so rightly said, sometimes we just hold it all in just because they don't understand or we don't want to worry them. And there is always the fear of being thought to be a hypochondriac, especially when we don't have a solid diagnosis or consensus among our doctors. Sigh~ Never fun.

I'm glad you'll be seeing a scleroderma expert next week. When I finally got my diagnosis, I burst out laughing (the rheumatologist must have thought I was a loony) because I was so relieved to finally have one.

We'll be looking forward to hearing more from you as time goes on, especially the results of your consult on the 18th.

Warm wishes,
Jeannie McClelland
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