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Doctor's waiting to see....

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#1 elly389



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Posted 10 March 2011 - 02:18 PM


My name is Ellie and I am 34 years old. I was diagnosed two weeks ago with cutaneous systemic limited sclerosis. I have all the classic signs. I have severe Raynaud's, Severe reflux, dysmotility in esophagus, joint pain, muscle pain and cramps. Hard skin on fingers and a rash on arms back stomach and legs. (like hives) I can't swallow and my ANA is 2560 with a high centromere pattern. I am exhausted all the time. I used to be very fit and full of energy. I am sorry to dump on everyone but I am having trouble finding help. My general practitioner sent me to London ON to a specialist for scleroderma. I think my heart is fine but I don't know yet about my lungs. I had a GI scope two days ago and they have but my on domperidone 4x a day and said something briefly about stomach surgery to stop the acid. What I want to ask is did anyone elses' rheumatologist tell them (with symptoms similar to what I have listed) that they were not going to do anything for them?

The doctor I am seeing said he was going to wait and see what happens. He also said I should be happy because it won't kill me and that the fatigue was just a cross I would have to bear and that there were no magic pills. I just want to know if this is normal for them to do nothing for someone.

I should state that I am on Nexium 80mg. Synthroid 125mg. Ranitidine 300mg amd noe domperidone 40 mg.

I am in a lot of pain and I don't sleep well. I am freezing all the time and I am exhausted.

If anyone can give me and answer that would be great. If this is normal then I just have to suck it up. I just want some answers and help. Is there anything they can do for the ANA or is it the centromere pattern that is the problem?

I am sorry for all the questions, I am just surprised that he said it was lucky that it was early stages and then said see you in 6 months with no form of help.

#2 Sheryl


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Posted 10 March 2011 - 04:33 PM

Hello Ellie, and welcome to your ISN forums.

From what I have read you gave all the classic symptoms of Scleroderma. You are getting some help now while you are being watched for progression. You are getting Nexium for you reflux issues. Domperidone for stomach or bowel issues.

If you are having very severe constant unrelenting muscle pain then I am sure your doctors would prescribe something for that. If it isn't constant and it comes and goes on a given day or week then normal over the counter medications are usually recommended by your physician. There are very good medications that work for your muscles and overall body pain.

Until more severe symptoms occur usually the doctors just watch for changes and wait to see if the things you are taking are starting to work.

You have come to the right place to ask questions and discuss how you are feeling on any given day. Many of us have had this disease 10 or more years already so we have been where you are heading.

To stay warm there are hot packs you can purchase that help. You can buy microwavable socks or slippers and mittens. You get used to wearing several light layers so you can peal and put back on with ease. Electric blankets were never enough for me when I was first diagnosed. I had rice bags and anything someone suggested micro waved and put in the bed to keep me warm at night. Heating pads also work.

Your doctors will watch your lungs for interstitial lung disease. Though that doesn't happen to many of us so don't start to worry about things that may never happen to you. Research and be your own advocate. Knowledge is a great weapon. You will go through many phases from am going to die to, or I can handle this, to excepting and then getting on with enjoying each and every day from this day forward. Ask your questions so you will know how to talk to your doctors about things.

Best of wishes and soft hugs surrounding you.
Strength and Warmth,

Sheryl Doom
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International Scleroderma Network (ISN)

#3 Snowbird


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Posted 10 March 2011 - 04:42 PM

Hi Ellie

Sorry to hear you are having such difficulties.

Is your rheumatologist a Scleroderma specialist?

I'll PM you...
Sending good wishes your way!

#4 Joelf


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Posted 10 March 2011 - 05:12 PM

Hi Ellie,

Welcome to these friendly and helpful forums!

I'm sorry to hear that you've recently been diagnosed with Scleroderma and that you're feeling so worried and confused. It can be very overwhelming when you're suddenly confronted by a disease which very few people have heard of (I couldn't even pronounce it to begin with, never mind anything else!! :emoticon-dont-know: )

However, there are a couple of good points for you to take hold of, firstly, you've found our forums and so immediately you're amongst friends who understand exactly how you feel and can give you excellent up to date information about this very complex disease. Secondly, your general practitioner referred you to a Scleroderma specialist which is very important, as unfortunately many rheumatologists simply don't have the expertise to deal with this bizarre illness.

I can empathise with your feelings of frustration because your doctor has told you he will wait to see what happens, as I think we all want answers about the way our disease will progress but I've learnt that it just isn't as simple as that and I know that my consultants were unable to predict the course of my illness when I was first diagnosed. We have a couple of links here to Gastrointestinal Involvement and to Raynaud's and also to Fatigue which I hope you'll find interesting and informative.

I do hope that this will go some way towards answering your questions and that you will feel a little more reassured and not quite so alone. Here's a :emoticons-group-hug: to make you feel at home!
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#5 Sweet


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Posted 10 March 2011 - 05:43 PM

Hi Elly,

Welcome to the forums. I'm so glad you've joined us. I'm really sorry to learn of all the distress you are under right now. I think a lot of doctors take the "let's wait and see" attitude, but that doesn't mean you have to stand for it. They should at least be treating your symptoms. Ask your provider about Plaquenil. It helps with fatigue, pain and has the ability to stop the disease in it's track. Hang in there honey! :emoticons-group-hug:
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 Jeannie McClelland

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Posted 10 March 2011 - 06:27 PM

Hi Ellie,

Welcome to the Forum! I'm sorry you needed to find us, but glad you did.

I'll try and hit a couple of the high points (more like bumps in the road than something to celebrate), but first have to say I'm not a doctor and if I were, I'd probably be a Doctor of Library Science. :lol: I'm going to give you a whole bunch of links and if you want to flip back and forth between this page and the links, click on the link with your right mouse button and open it in a new 'tab'. (Boy, was I glad when I learned how to do that. :) )

ANA and centromere pattern - those are simply antibodies (ANA) with a particular pattern (centromere). They're more like footprints than anything and a marker or pointer to the possibility of a particular range of diseases. They aren't anything you would want or need to treat. To give another example, my freckles just tell my doctor that I'm out in the sun a lot.

From your description of your symptoms, I wouldn't accept an answer of 'no treatment' and 'a cross to bear'. That doesn't strike me as a helpful attitude. Now not being willing to offer a prognosis is pretty common. This disease seems to affect everyone just a little bit differently and some get one symptom but not another, some progress and some don't, most experience a good and lasting remission at about the 5-year mark, but a few won't. When I asked my rheumatologist what the prognosis was, he said, "You'll do as well as you do." I'm not going to tell you what I thought about that! Anyhow, onwards.

It sounds like your GI problems are being treated - I'm on Motilium and have been for quite a while. The surgery you mentioned might be a fundoplication where a fold of the stomach (that's the plication part) is brought up and wrapped around the lower end of the esophagus to support the lower esophageal sphincter (the fundus part). It is usually quite effective at controlling reflux (I had 100% positive results) and by controlling the reflux is thought to protect the lungs by preventing aspirating (breathing) in the acid and undigested food into the lungs. It also protects the esophagus and that is important too. The surgery is done laparoscopically (no big incision) in most cases, so it's not as horrific as it might sound. I was only in the hospital one night. It was a wonderful decision for me.

There are, as Sheryl has said, many medications to treat pain and fatigue. A commonly prescribed one is hydroxychloroquine (Plaquenil) which seems to help with both pain and fatigue. There is a large range of NSAIDs (non-steroidal anti-inflammatories) that might well help with the pain, as well as numerous other classes of drugs. Back to the subject of fatigue, this is my favorite link - it's regarding cancer and fatigue, but has the best and most comprehensive list of tips I've ever seen.

There are a number of things for the Raynaud's, although prevention of attacks is best. (A box of chemical handwarmers is one of my favorite presents from my hubby, right up there beside chocolate!) For instance, some of the drugs like Viagra or ACE inhibitors can help, some doctors prescribe topical nitroglycerin gels, some of our members have even mentioned taking nitroglycerin tablets under the tongue in a severe episode. Since you mention taking Synthroid, you ought to be having your thyroid levels tested regularly - hypothyroid conditions can really make that 'coldness' worse. It's actually one of the symptoms of hypothyroid conditions.

There is also a range of drugs used to treat skin fibrosis and others that systemically suppress the overactive immune system which is the cause of most of our problems. Unfortunately most of them carry some degree of risk and/or unpleasant side effects and may be inappropriate at this time. However, if you show lung, kidney, or heart involvement or pulmonary hypertension, then in my opinion, for what it is worth, you should receive treatment beyond the things I have already mentioned. If you were to show rapid progression (and you hopefully will not), I'd also think you should be treated more aggressively. Here's a link to the page on general scleroderma treatments. There isn't a one-size-fits-all treatment and since there is no cure, when looking up treatment options, you'll need to look them up by symptom/complication. There are most definitely treatments for all the various symptoms and there are both a lot of research going on currently and new and better treatments coming along all the time.

I was diagnosed in Oct. 2006 with systemic scleroderma sine scleroderma (which means I don't have skin thickening) and at that time had already developed pulmonary fibrosis and pulmonary hypertension. I started treatment for both of those complications about 6 months later, so a wait to begin treatment isn't unheard of. I guess what would concern me and I think it does you, is having a doctor who has given me the feeling that he is unwilling to treat at all. Here is a link to a list of doctors in your part of Canada who are members of the Scleroderma Clinical Trials Consortium. I'd give him at least to the next visit and until all the test results are in, before even thinking of changing, though. There's sometimes a bit of a problem in establishing a good working relationship with a doctor and it's not unusual to find a scleroderma expert who is primarily interested in lung complications or skin fibrosis, for instance, and could really care less about other issues. It's pretty frustrating and what I've done in the past is to state plainly that such and such a problem is greatly affecting my quality of living and that I would like to either address the problem with him or else have a referral to a doctor who is has a greater interest in that area. I'm awful at anything that smacks of confrontation, but on the one occasion that I needed to take that tack, it worked out great.

Okay, you can probably add eye strain to your problems after all that! I hope you'll post often and ask as many questions as you like. Feel free to vent or rant if you need to, we all do. The upside is that when you have good news (and you will), we all get to celebrate with you.

Best wishes,
Jeannie McClelland
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#7 jillatk


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Posted 10 March 2011 - 10:02 PM


Welcome to the Forums. You are in the right place to find answers and get support. Jeannie about covered all the bases. I will add that I was a very active, healthy individual before the disease hit me and after 2 years of treatment I am right back out there doing the things I love to do (climbing, snow shoeing, backpacking). One thing you will learn is how to work around the things that don't work so well. I encourage you to find a doctor who will work with you and address your symptoms. I also strongly encourage you to get active and live the best life you can live. The first few months are the most difficult and scary, but it will get better. Remember that you have lots of control over feeling better, even when it feels like your body is being uncooperative.

Keep posting and letting us know how you are getting on.


#8 Shelley Ensz

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Posted 11 March 2011 - 12:11 PM

Hi Ellie,

Welcome to Sclero Forums! Your new friends here have given you lots of great advice and links to follow. So I just want to say hello, and that I'm glad you've found us. I'm sorry you have scleroderma, and I know it is an awful lot to adjust to all at once. But hang in there, it sounds like you're getting your feet on the ground with it already, and the more you learn, the easier it will be. Unfortunately there are no magic pills that will make everything go away, plus there are many medications that will only complicate things and make other symptoms worse. For example, pain pills can generate brain fog and greatly exacerbate G.I. issues, slowing things down to a complete standstill sometimes.

Remember that your rheumatologist is not the be all and end all for your treatment! Your primary care doctor can also be of great help and especially help fill in the gaps between your rheumatology appointments. If you feel there are things that can/should still be addressed (like fatigue), speak to your primary care doctor about it. Who knows, you might need to see an endocrinologist to get your thyroid optimized, or a sleep study to detect underlying sleep disorders. I lived with very severe fatigue for many years, until I was finally switched to a 'natural' thyroid hormone, rather than the synthetic ones like Synthroid. It turns out my body was unable to convert T4 to T3 (or whatever it is) that the synthetic versions require. Plaquenil also helped me with fatigue (but in the end, not as much as the thyroid change.)

What I'm trying to say is that some of your issues might not be an immediate or easy fix, so in the meantime, while they are being worked out, you may find there is an awful lot to just put up with. At least, I sure did, and there are still things today that I just live with because it gets nearly crazy-making to try to treat everything because everything that gets treated has its own set of side-effects which just compound the problems! I'd say, don't give up but do make an effort to dial back down your expectations in the interim because this is a long haul process, not a quick fix, no matter what approach is taken.

Warm Hugs,

Shelley Ensz
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#9 debonair susie

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Posted 11 March 2011 - 12:48 PM

Hi Ellie! Welcome, Welcome!

So happy you joined our very large family...you have made a VERY wise move in doing so! :bravo:

You have received so much great, as well as helpful information/suggestions from those who posted before me.
Please know that experience speaks volumes, where they are concerned.
I am hopeful that in the very near future, you will receive something to help with your pain, which should also
help you sleep better, once that is addresed.

Take care of yourself and please implement the suggestions that have been offered, where keeping warm is concerned,etc.,
that do not require presriptions ie: microwaveable hot packs.

Please keep us posted on how you are doing?
Soft Hugs for you.
Special Hugs,

Susie Kraft
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#10 Amanda Thorpe

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Posted 11 March 2011 - 05:14 PM

Hello Ellie

Welcome to the forums although I understand you'd rather be anywhere else! I am into year 4 with diffuse cutaneous systemic sclerosis and have picked up skin involvement, joint involvement sclerodactyly, gastrointestinal issues, myocardial fibrosis and ulcers. Who knows what I'll collect next! :lol:

In the beginning...wow sounds authoritative eh?! In the beginning...of my scleroderma journey it was all a bit of a scary blur :nervous: I remember arriving for my first appointment, with the scleroderma specialist, and sitting in the back of the car whilst hubby went to get a wheelchair for me, and bursting into tears because I didn't want my life to become a series of hospital visits, tests and admissions. Well it had and still is the difference is that now I have adjusted to it so it doesn't actually bother me, in fact a trip to the hospital can be turned into a day out!

The point is that...in the beginning...which is where you are, it can all be a bit of a scary blur :nervous: but it doesn't stay that way. You adjust, adapt and begin to enjoy things again. :woohoo:

Take care and keep posting.
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#11 queenie


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Posted 12 March 2011 - 05:56 PM

Hi Ellie,

I too have to agree that in the beginning it all is so overwhelming and seems so dark and depressing. But it is true that in time you can begin to see more light at the end of the tunnel. Maybe not as bright as you'd like but never the less a light. the best advice I can give you is to try and not look to far into the future about what may or may not happen as this disease affects everybody differently. Just take each day as it comes and do only what you can each day. Don't try to push yourself past your limits. Even if you take each day hour by hour, that's what I do as each day can be so different from the previous day and also some symptoms you experience may only stay for a short time and then ease away and others may stay longer.

Now about your rheumatologist. If you are not happy with his/her manner you can always ask to see somebody else or to be referred to a specialist as I met a few unsympathetic doctors myself over the years and I feel it is important that you feel you can trust and relate to each other in order for you to feel comfortable enough to open up and discuss things with them.

Take care.

Hugs and loves,

#12 Tawanda70


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Posted 14 March 2011 - 08:10 AM

Hi Ellie. So glad you found this forum. Sorry to hear what is going on... your symptoms are so close to mine. I first saw a rheumatologist that told me there was no cure, little treatment and to just "deal with it". Needless to say, I never went back and have been treated by my general practitioner since. I have an appointment with a new rheumatologist this month that has some knowledge of this disease. The closest rheumatologist to me that is a specialist in scleroderma is too far away, so I hope I am happy with the one that I am going to see.

There is not much more that I can add, as everyone that has posted as done an excellent (as always) job in describing the disease, providing useful links and supporting you. This is a wonderful place to come to and I encourage you to keep us posted on what is going on. Hang in there and know that we are always here for you!