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Diagnosed today with Limited Scleroderma


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#1 marjalinajolie

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Posted 06 January 2012 - 04:21 PM

Hello All!
I have been lurking around the site for a few days now just trying to learn as much info as I can.
I had my second appt today with my rheumatologist and I was given my diagnosis of limited scleroderma. I am not quite sure how I am feeling about all of this. I am in a sense relieved that the problems I have been having have been identified with an actual illness as I was beginning to feel like I was going a little crazy. I now know I was not.

My journey began back in April of last year when I went to see my primary care physician for pain in both of my thumbs/wrists. At that point I was diagnosed with DeQuervains Tendonitis in my right thumb (at that point and even still now my right hand is worse then my left). My primary care physician sent me to see an orthopaedic MD who then did cortisone injections in both thumbs. I ended up back to see him as I was still having pain (the actual tendonitis did resolve) so he suggested occupational therapy. He only ordered for the right hand (not sure why since I was having problems on the left as well). The therapist said I had tendonitis in my index finger on the right hand and worked on that awhile. It wasn't progressing like she thought it should so she disconntinued the therapy and sent me back to my primary care physician. At that point they ordered some bloodwork which included ANA, and also tests looking for RA. She was leaning towards RA as one of my complaints was stiffness in my hands in the morning. Well everything came back ok except for the ANA. I got a phone call from a nurse in the primary care physician office telling me that the test came back positive for and autoimmune marker but that was all the more they could tell me and they needed to refer me to the rheumatologist. He was able to squeeze me in a week later and I didn't have enough physical symptoms at that time to diagnose me with limited scleroderma but he did give me an informational booklet and told me that my bloodwork was pointing towards that. He wanted to see me back and also ordered additional bloodwork to check my kidneys, liver, thyroid and repeat ANA. I have access to view lab results when they are released to an online system through my provider so after obtaining the results earlier this week and doing research online I was pretty sure I had scleroderma. My ANA again came back positive as well as my anti-centromere antibody, which I read a fairly high percentage of limited scleroderma patients have.

Since my first rheumatologist visit I have begun having Raynauds as well as heartburn so that along with the bloodwork has now officially made me a member of your exclusive club! :emoticons-clap: My doctor also ordered a chest xray, echo, and pulmonary function test as well as a visit to a GI doctor for and Esophagogastroduodenoscopy (EGD) . He didn't actually say he was wanting to get baseline readings for all of these things but I have enough knowledge of healthcare to know this is the case. I did also ask if he has seen any other patients with scleroderma and he says he has seen approx 50 patients with this disease so he maybe isn't an expert but at least has seen some patients to hopefully have better knowlege on the subject.

My husband went with me to the appointment today. He has been what I call ignoring me when I talk about something being wrong with me as he always says I could live without him but he could not live without me. He is sort of in denial I think about me having an illness. I also told my 13 year old daughter when she came home from school and told her there was some info she could read to better explain this. I have told one co-worker and asked her not to tell anyone else. I feel safe I guess you could say telling all of you...a bunch of strangers because you all understand what this is like but I am not sure how I feel about telling others in my life. I will have to tell my parents/step-parents. I am okay telling my dad but a little worried about how my mom will take the news and not sure how or when to tell her. Also what about work? Does anyone have any advice on whether or not to tell my boss? This is just all so new to me so I guess it will take a little bit to sink in...

ANY advice, suggestions, information, etc would all be greatly appreciated!! :thank-you:
To the moderators...I appologize for the oh so long post!

#2 judyt

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Posted 06 January 2012 - 06:25 PM

Hi Marjalinajolie,

Welcome to these forums, even though it is sad that you think you have Scleroderma. I am just going to welcome you and wait for others to chime in with their thoughts on the questions you have asked.

Yes we are strangers, and we would pass you on the street without a second thought, so yes we understand that it is easier to talk frankly without feeling foolish because we have all been there, done that!!!

Warm hugs and best wishes.

JudyT

#3 Joelf

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Posted 07 January 2012 - 07:53 AM

Hi Marjalinajolie,

Welcome to these forums and to the Scleroderma Club!!

I'm sorry to hear that you've just been diagnosed with Limited Scleroderma. I can empathise with you as I also have Limited Sclero and like you some of my first symptoms were swollen, painful wrists and fingers, Raynaud's and a general feeling of being tired and under the weather. I then developed lung involvement which actually was fortuitous as it enabled my consultants to diagnose and commence treatment quickly with very encouraging results. When diagnosed, like you, I was very relieved to at least have found a reason that I had been feeling so poorly.

It's a good thing that your rheumatologist has experienced other cases of Scleroderma; however, we do recommend that our members consult a Scleroderma expert as it does require specialised knowledge to deal with this complex and unusual disease. Although the blood tests can help with an initial diagnosis they are by no means conclusive (as many of our members can testify) as it is possible to have negative blood tests and yet develop full blown Scleroderma and vice versa. It does sound as if your doctor has things under control as he arranged a series of tests for any other internal involvement, which is a good move!

It is a very difficult disease to explain to your friends, family and work colleagues as it varies so much and I can sympathise with the problem of telling them about it. I actually bored everyone I knew to saturation point describing my symptoms, treatment and what I considered to be absolutely fascinating details of my illness; nowadays I tend to play it down a bit and not mention too much about how I'm feeling for fear of becoming a social leper whom my friends go out of their way to avoid!! My long suffering husband is used to me and also deaf in one ear so can switch off if I'm becoming a bit tedious!! :rolleyes: ;) :lol: As far as your work colleagues go I'm afraid I can't advise you as I wasn't in employment when I was diagnosed but perhaps you should see how it will affect your working life and then you can decide the best way to approach it.

I'm very pleased that you've joined our community and look forward to reading more of your posts.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#4 miocean

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Posted 07 January 2012 - 10:37 AM

Welcome Marjalinajolie,

I am glad you have joined in and are sharing your scleroderma journey with us. :bravo: It sounds to me like you are pursuing all the right avenues of medical tests and that you are well informed about them. I would agree with Jo about seeking a scleroderma specialist once you get all your baseline test results and have time to digest it all. There may be trials you can take part in that another doctor may not be aware of, or a treatment for a specific area that is affected.

A word of advice is to keep all your records in an organized file system, whatever works for you. Get copies of everything possible. You never know when you will need to see another specialist or if you just want to go back for your own curiosity. I am still going back to get records from 7 years ago just to figure some things out for myself...I have diffuse scleroderma with all my organs damaged, including my kidneys and an almost 2 year old transplant. Like you, I started out with hand issues, but unlike you, downplayed it and ended up in a crisis.

Just yesterday I went to see the pulmonologist at my scleroderma center and along with me came my husband and a bag with a 3" binder of all my medical records and a disk of my most recent CT scan. I was able to pull out reports from the past and made everything much easier for the doctor. My husband has accompanied me to all my major doctor appointments. If your husband can and will do that it will help him understand your health issues. However, some people just can't handle it. If he falls into that category, bring an understanding friend with you, another ear may catch something you miss.

I have learned that some want to know what you are going through and for others it is better to say "I'm hanging in there" with a smile. Here is the link to the ISN Emotional Support page, and please read The Spoon Theory. It may help you explain things to your friends. I did not have to deal with telling my employer as they found out when I was hospitalized. They were very understanding and offered to hold my job for me as long as I wanted them to or to come back on a part-time basis whenever I was ready but being on dialysis 3 days a week and reading the mortality rate of 5 years scleroderma with renal failure (that has changed since then, also) I decided I didn't want to spend the last 5 years of my life working and on dialysis so I retired on disability. That was a good decision because there was no way I could have worked.

And the good news is I'M STILL HERE!!! :emoticons-clap: Don't let the statistics you read about mortality rates scare you, many of us have outlived them. That was the greatest encouragement when I joined this forum.

Here are some spoons :spoon: :spoon: :spoon: and keep us up-to-date on what is happening.

miocean
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#5 marjalinajolie

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Posted 07 January 2012 - 11:38 AM

Judy, Joelf and Miocean,

Thank-you all for your welcome and advice. I think those are all great tips and I intend to begin working on
a file this weekend. I only have a few things to add at this point but know with my upcoming tests that soon I
will probably have a big binder as well! It is a great comfort knowing that there are others out there that have
already started to walk down the path I am now going to be traveling and an even bigger comfort to know that
I won't have to do it alone. I think the fear that others close to me just won't really understand or get what I am
going through is one of my biggest fears but thankfully I will have all of you here that will understand!

I did tell my dad and step mom via phone last night about my diagnosis and since they live half way across the
country from me they were really wishing they could give me a hug. Funny thing is as I was telling them, I was more
worried about their emotional well being as I was sharing the news than my own. I guess since I have really already
had a few days to process this information (since I really already kinda knew the answer before I got the official answer).
Oddly right at the moment I am not mad or asking why me but rather just saying (as my dad always does) "It is what it is."
I am sure I will have days that lead me to be angry, frustrated and sad but right now I guess frankly the diagnosis is what
it is and I know I cannot change the actual diagnosis but I am able to control how I feel and my actions. I choose to keep on living and just take the challanges as they come.

I will also definately check into the scleroderma experts to see if there are any in my area. I am sure the health insurance could be an additional battle as I currently have an Health Maintenance Organisation (HMO) policy but I guess I will just have to see how that plays out. I think it would be great to be part of a study for scleroderma. That is part of what helps to make great advances in healthcare especially when it comes to rare diseases that the experts don't know all they need and or want to know.

Oh I did just think of another question..I did ask the doctor yesterday but wondering the opinion of those here. I am a frequent blood donor and I asked if I would still be able to donate. He said yes since this isn't something that is contagious but wondering what your thoughts are on the subject??

Again thank you all for your support, it means the world to me!

#6 Joelf

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Posted 07 January 2012 - 12:11 PM

Oh I did just think of another question..I did ask the doctor yesterday but wondering the opinion of those here. I am a frequent blood donor and I asked if I would still be able to donate. He said yes since this isn't something that is contagious but wondering what your thoughts are on the subject??


It's an interesting question and I think you may need to ask at the blood donation centre when you next visit them but I'm sure anyone with systemic Scleroderma would not be able to donate blood.

I've found an interesting thread about Blood donation which I hope will give you more information. For myself, I think I would probably not be accepted as a blood donor (even supposing I wanted to be one) as I have systemic Scleroderma and also have to take an immune suppressant and steroids as well as other drugs.

Kind regards,

Jo Frowde
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#7 judyt

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Posted 07 January 2012 - 02:10 PM

Hello again Marjalinajolie,

I just knew you would get a good response from others, and sure enough you have. It would seem, from what you have said in response, that you are a feet on the ground lady and that always makes things easier I think.

As my kids would tell you, not that you will ever meet them!, that is pretty much my approach. When ever they had a problem we would discuss the pros and cons then Mum would say "so now what are we going to do about it". :rolleyes: I have been told by my daughter who is now the mother of 3 lovely girls, that she was brought up by a very sensible Mum and that makes all the difference.

It is not always easy to stay positive, but it does make a difference. My husband has just read out from the newspaper that Stephen Hawking turns 70 tomorrow and when he was 21 he was given 2 years to live :emoticons-yes: and I can't help thinking that has got something to do with positive thinking.

As you can no doubt tell, I am in a philosophical mood this morning, the world is a beautiful place and it is worth the effort to keep on keeping on.

I used to be a blood donor years ago, and I don't really know why I stopped, probably because we set off round the world on our OE and I just didn't have the opportunity for a long time. By the time we got back I wasn't as well as I would like to have been and it has been a long journey of 40 odd years from there. Some people have issues with venous problems, because Sclero is a Vascular disease (so I am told) and sometimes getting into veins becomes problematic - I would think it will just depend on you and your medications as Jo has said. I used to work in that field and remember that the personal profile form asked lots of tricky questions about current health and medications.

Once again, welcome to the forums, we will enjoy geetting to know you and hope you get as much comfort from our posts as we do.

Warm Hugs and best wishes from the upside down side of the world

JudyT

#8 Amanda Thorpe

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Posted 08 January 2012 - 01:54 PM

Hello Marjalinajolie,
Welcome to the forums! A diagnosis can actually be a relief because you have a name to pin all of your symptoms on and now that you know what the cause of the symptoms is you can start to treat the symptoms n hopefully start experiencing relief.

We have a video about limited scleroderma that you could always refer people to for an explanation about your illness. Sometimes it's easier to hear it from someone else.

Take care and keep posting.
Amanda Thorpe
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#9 Sweet

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Posted 08 January 2012 - 03:07 PM

Marjalinajolie I welcome you with open arms!

I'm sorry that you've been diagnosed with LImited Scleroderma, even though I know how nice it is to put a name to it. I too have Limited Scleroderma now for the past 12 years. I've managed things fairly well, and I think compared to some, have had somewhat of a slower progression.

Have they started you on any medications?
Warm and gentle hugs,

Pamela
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#10 barefut

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Posted 10 January 2012 - 11:23 AM

Hi and welcome Marjalinajolie,

Great advice given so far. Just want to say best wishes with everything. It is hard deciding if/when/who/how to tell friends/family and especially employers. Be careful with that last one.

Take Care,

#11 Snowbird

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Posted 10 January 2012 - 05:55 PM

Hi Marjalinajolie

Just wanted to welcome you as well. Sounds like you have the ball moving and are perhaps going to seek a scleroderma expert as well. I can tell you that that was the best and smartest thing I did for myself. I strongly recommend that you do not read all about this illness on the internet, it's a bad place to go. Been there, did that, not going back either. This is the best place for factual information and there is always 'someone in the know' so it's a great place to ask questions.

My tests were for 'baseline' :)
Sending good wishes your way!

#12 70x50

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Posted 14 January 2012 - 05:20 PM

I am seeing my Rheumatologist tomorrow. I have a positive ANA but homogenous, trouble swallowing--food feels stuck, exhausted, pains in joints and muscles and Achilles, rash, starting to regurgitate at night. My fear is that the issues are receding and I get no diagnosis.

#13 judyt

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Posted 14 January 2012 - 08:37 PM

Hi 70x50
Welcome, sorrry that you are here because you are not well, but this is the place to get good advice and support.

If you can, take somebody with you who can be more circumspect, and help to remember all that is said. You have no doubt been referred by a general doctor, so you need to ask the rheumatologist to copy you in on any letters he writes about your situation. Also keep copies of all your blood tests and other investigations. If you haven't already, start a file where you can easily store all these documents together.

Hopefully, the doctor you are seeing tomorrow is a Scleroderma expert, it makes all the difference if the person you are seeing is conversant with this puzzling disorder.

Best wishes for romorrow, we look forward to hearing how it goes,

JudyT

#14 Joelf

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Posted 15 January 2012 - 01:30 AM

Hi 70x50,

Welcome to these forums!

I'm sorry to hear that you've been experiencing worrying symptoms. I'm afraid that Scleroderma can be a very difficult disease to diagnose and the symptoms can refer to other health problems so a diagnosis is by no means straightforward. We do recommend that you consult a Scleroderma specialist if at all possible as Judy has suggested. We have a new page under construction the ISN Guide to Scleroderma Experts which I hope will be helpful to you.

I do hope you have a productive appointment with your rheumatologist; please do post again and let us know how it goes.

Kind regards,

Jo Frowde
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#15 Amanda Thorpe

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Posted 15 January 2012 - 03:11 PM

Hello 70x50

Welcome to the forums! I also ensorse seeing a recognised scleroderma expert only as you have to give yourself the best chance against scleroderma.

Have a read of Jo's link and I look forward to hearing more from you.

Take care.
Amanda Thorpe
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