Newly Diagnosed - Possibly CREST
Posted 24 March 2010 - 08:00 AM
Thank you for your thoughts and information on the med issue.
I had an appointment with my rheumatologist yesterday. He evaluated me and looked over my labs and said that my disease does not appear to be progressive right now. However, we need to continue monitoring for internal organ involvement.
I told him about this forum and the information I received about the meds. He told me if I wanted to (but he wouldn't recommend it at this time), we could look into some meds. He just doesn't feel it's necessary at this time. I guess I'm okay with that, for now. He is very thorough and I don't have any complaints about him. He's okay with me talking to him openly and frankly. He always addresses my issues and concerns.
I only have skin involvement right now. It hasn't really gone past my hands, if that makes sense. My skin is getting really tight there but minimally everywhere else. I have darkened skin on my right shoulder and a little on my right. My forearms are darkening a little but not so noticeably. The skin is not tight.
He was a little thrown when he saw how much my skin tone has changed since my last visit. He said he didn't expect that much change. I went from a little spot on both my back and chest. Both places have expanded greatly. My chest is splotchy (I'm dark, so the spots are tan) almost to the entire width to my shoulders. My back is a different story. It went from a little butterfly look right below the nape of my neck to my entire upper back a consistent tan color - no splotches.
I'm not sure what this means and was afraid to get an answer from my doctor, so I didn't ask.
Posted 24 March 2010 - 08:08 AM
Thanks for the information, if I haven't already thanked you.
I had an appointment with my rheumatologist yesterday and told him about the study. He listened but also said there are some studies that show that statistic, but he always works on the premise that no matter what race or ethnicity, he takes into account the possibility of all internal involvement. He doesn't treat anyone more aggressively than the next.
He also said that if I wanted to do more tests with that in mind, he will do it - whatever I'm comfortable with. He wants me to come in for follow-ups every 3 months or so. He also ordered a chest x-ray and I'm waiting to hear back from him on the results. Based on the lab work and my letting him know that I'm not having any trouble breathing, he thinks I'm safe. I told him I was comfortable with his decision as long as we are diligently keeping watch over it.
What do you think?
Posted 25 March 2010 - 10:27 AM
My scleroderma doctor is at Johns Hopkins. He too says the sooner you get treatment the better. I could hardly walk when I started seeing him. My disease was progressing so fast. He started me on Cellcept which slowed the systemic scleroderma (SSc) down and put it into remission and has reversing most of the past damages. I have now been on it for 7 years. and in fact have tried to come off of it and the scleroderma comes back. So I am on it for life.
All of this is to tell you, there is much hope, just find a good Scleroderma Specialist....
Posted 26 March 2010 - 09:23 AM
Posted 31 March 2010 - 06:45 AM
From my experience with doctors/health care you must be proactive about your care. Don't be afraid to ask questions and don't be afraid of the answers you'll get. If you know, then you can deal with the issue. If you don't then you just worry.
I went to 3 specialists before I received a correct diagnosis.
Posted 31 March 2010 - 09:23 AM
The world of scleroderma does seem a very frightening place at first, until you find a forum like this and you realise you are not alone and you are not about to die. I was diagnosed with systemic sclerosis about fifteen years, at the time my General Practitioner dismissed it as something that would affect my skin when I am older and left it at that. Last year things kicked off a bit and the S word was mentioned again and the rollercoaster ride started. At first I was frightened when I realised for the first time what I had really got, (I didn't have access to a computer in the 1990's) but then it suddenly struck me that I had had the disease for at least fifteen years possibly longer. With acceptance comes some sort of peace of mind, I have it and I can't change that fact, so learning to live despite it, is the key.
As to dying, I seem to remember reading somewhere that more women get this disease, but more men die of it, so on a positive note you are in the right gender group, (as if we didn't know that anyway girls!)
You take care and try not to worry, worrying will not make it go away, it will only make you feel worse. So chin up and kick butt!!!
Cotton wool Hugs
Posted 01 April 2010 - 12:59 AM
When you say that you saw 3 specialists, what kind?
I've been to a number of specialists and they all came up with the same diagnosis, scleroderma. But they all had different specialties (e.g., GI, dermatologist, endocrinologist).
Posted 01 April 2010 - 01:10 AM
Thanks for the inspiring words.
I've read either on this forum or other websites I came across during my research, that scleroderma can go into 'remission?'. I'm not sure if that's the correct term or not. Is that what happened to you? I just wonder what was going on during the time your doctor said it was only your skin to once you were finally diagnosed.
It's hard not to worry. I still haven't told my 18 year old the real story of the disease and what I'm really going through. I'm picking her up from college for the weekend and wonder if I should give her the complete picture. Or should I just update her when things start getting bad and I Have to tell her? I just don't want her worrying needlessly when she needs to focus on school. She has a full academic scholarship and has to keep her grades up. I feel knowing this may not be such a great idea right now.
Posted 01 April 2010 - 02:19 AM
I really agree with all the others on here who are reccomending that you press your doctor to go onto medication. I also think it is really important to find a Sclero specialist.
I am not a medic but I hate to think of you fiddling while Rome burns.
Keep your chin up and get on the case.
Posted 01 April 2010 - 08:45 AM
My son went off to university in September. Like you I didn't want to tell him too much, just in case he decided not to go and I didn't like the idea of that happening as I want him to live his own life and not put it on hold because of me. I told him what I thought he needed to know as matter of factly as I could, I assume I fooled him because off he went.
May be you could put off giving her the full picture just a little bit longer (or dilute the facts down) until you have got your head around it all and you feel strong enough to deal with it yourself. If she can see that you are strong and coping with it, then hopefully she will worry less. But like us our children also have access to the internet, so there is always the danger she may do her own research and come across all the scary stuff anyway, so it is a difficult call to make and the flip side of the coin is, that it is important to have family and friends on board so that you get all the help and support you need with this.
I'm sure you will find the right words and the right time, so good luck and take care.
Posted 01 April 2010 - 01:43 PM
I went to two rheumatologists, one who said maybe lupus and one who diagnosed me with lupus, so I went to the lupus clinic in the city that I live in and saw a immunologist. She diagnosed me with Scleroderma.
The reason I went to so many doctors is that I was unhappy with the care I was receiving. I wasn't looking for a different diagnosis. When I went to the lupus clinic they started from scratch and tested me for everything. They took 15 or 16 vials of blood, a complete medical history and asked lots of questions.
I'm concerned that you are just searching for someone that will tell you that is is all a bad dream. At some point you're going to have to come to terms with it and take control of your situation. Finding a doctor that you can talk to and will take the time to explain things to you is important and will help you accept that you are ill. You've taken a huge step in getting diagnosed and it's scary. Trust me I know, I wish I had lupus, because when I thought I had lupus it looked like I had a mild form of the disease.
If you learn all you can and take an active role in managing your disease it will help ease your mind.
Posted 07 April 2010 - 02:15 AM
You are correct! I was trying to find a completely different diagnosis. I didn't want it to be what it is or coming to be.
Yes, it is very difficult not to have this in your head on a daily basis.
Unfortunately, I am pretty tired and it's very difficult for me to focus and stay awake long enough to complete a thought here.
I'll continue to check in throughout today.
Posted 07 April 2010 - 12:26 PM
Just wanted to give a word of encouragement on the child front. My son,who is 19 (20 at holiday), is getting ready to embark at university in September.
I was diagnosed last July with systemic scleroderma, and over the last few months its been a roller coaster ride of emotions and coming to terms with all the disease brings our way, but our children are a lot more intelligent and resolute than we think! We still see them as our babies and have this great need to protect them from the harsh realities of life, that's what us mums do! But as young adults, they need to be aware and told what our illness is and how it affects us,and above all.
Be honest and upfront with them. I sat my son down and we had a lovely talk about things and I gave him the chance to ask me his worries, and when things do raise their heads, yes he worries but he knows that I am in control and have been well looked after. He has been wonderful, he knows that he must get on with his life and education and move into a new way of life at university and that's what I want for him. You know your child better than anyone, but if they must know then let it come from the one person they love and trust the most. I am sure you will be pleasantly surprised how well they take your news and its one less thing for you to stress and fret about.