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New Here, Don't Understand Ltd Sclero


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#1 Indy

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Posted 28 March 2011 - 06:19 AM

Someone suggested I post as a new thread. See below. Can someone tell me if this is just nothing to worry about and if this is just a discomfort or is there more to it?

I'm new here. I note that you referred to a list for sclero experts. Can you tell me where I can obtain or look at the list? I don't understand this disease. I have limited scleroderma and don't understand what it means. I have a great rheumatologist but she doesn't really explain anything as to what she is doing and I'm too naive or afraid to ask what any of this means. Is my level just discomfort here and there in life or is there potential for this to be life threatening? I don't understand.

Can someone help me with an answer? My main reason that I went to the doctor in the first place was my persistent cold intolerance that is getting worse. Raynaud's was diagnosed. That seemed to be it, no big deal...but then out of the blue, I go to the doctor for a check up and my blood pressure is really high for no reason. I'm a runner and am in great shape. I had just run a marathon the week-end before my appointment. There should be no reason for high blood pressure. Then other things are popping up...severe constipation (with disabling cramping just at times) and heartburn, trouble with swallowing. I don't have any pains or anything. Does all of this mean this disease is progressing. I don't understand? Will this all get better and then subside and maybe flare up time and again or is it always here?

Again, my main question is, is this life threatening? Or is it just an annoyance but you can live with it? Anyone who can help me understand this, it would be appreciated

#2 Joelf

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Posted 28 March 2011 - 06:43 AM

Hi Indy,

Welcome to these helpful and friendly forums!

It's a very good idea for you see a Scleroderma specialist and Enjoy has given you a useful link to help you find one; I've included another link here which I hope will be useful to you. Please don't be afraid to ask your rheumatologist anything that bothers you; after all that is their job and a Scleroderma expert should be able to give you lots of information to help you.

Like you, I have Limited Sclero and Raynaud's and I've included a link to Limited Sclero and Raynaud's to help you. I'm also fairly fit so we have quite a lot in common and before I was diagnosed with Sclero I was running half marathons; unfortunately my lungs have been affected so that has rather put paid to running long distances although I still run and exercise, albeit at a lower level.

Thankfully I haven't suffered with gut involvement but I've included yet another link to Gastrointestinal Involvement which again I hope you'll find helpful. I'm afraid I can't advise on your blood pressure (mine has always tended to be on the low side) but hopefully if you can see a Sclero specialist he/she will be able to advise you. Sometimes we can develop symptoms which are actually nothing to do with Scleroderma so it could be unrelated, but it muddies the waters, if you see what I mean!

Like Judy, I intend to be around for a good many years yet (if only to get my money's worth from my pension!! ;) :lol: )

Do please keep posting and let us know you get on.

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#3 Indy

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Posted 28 March 2011 - 07:45 AM

Thanks for the info. Jo. I do want to know though, you are a runner, when did you realize that you couldn't do the longer distances? What caused you to cut back? I am getting slower, but just feel it's because I'm getting older. I'm not going to drop dead or anything while I'm out running am I?

#4 Jeannie McClelland

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Posted 28 March 2011 - 09:32 AM

Hi Indy,

Welcome to the Forum. I am really sorry you've needed to find us, but am glad you did.

First things first, here is the list of scleroderma experts. I think all of us would recommend seeing a rheumatologist who treats other scleroderma patients as opposed to a 'general practice' rheumatologist. In cases where you need to travel a fair distance to see an expert, it is often possible to have them oversee your case and see a more local doctor for the routine check-ups, etc.

I chose that as the first question because the rest are so difficult. Scleroderma is a disease that affects everyone differently and it is extremely hard to make an accurate prognosis, especially early in the game. It could stay a minor irritation, could become truly annoying, and yes, could become life-threatening. Your symptoms (Raynaud's and gastrointestinal problems) are extremely common to all of us and not necessarily an indication that your disease will progress to life threatening. I'd say the two worst things you could do is read about things that might not ever happen and decide that you will get them and allow yourself to get stressed about the diagnosis. I know that's easy to say and sometimes hard to do~

I hope you'll post often and let us know how you are getting on. Please feel free to ask any questions that occur to you and know that you can also come here to rant, to laugh, and to make lots of understanding new friends. I'll be looking forward to hearing how you are doing in this year's marathons!

Best wishes,
Jeannie McClelland
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#5 Sheryl

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Posted 28 March 2011 - 09:59 AM

Good morning Indy and welcome to the Sclero forums. There is no way to tell with any of us what the progression of our diseases will be. We learn to accept and adjust and get on with living and getting the help we need from our specialist. You mentioned being cold, the Raynauds, and blood pressure. All of the above can be helped with medications. Something simple like Norvasc will help with all three of those symptoms. As your doctors get to know what is going on with you they can treat things as they develop. Depending on where you live, how many months of really cold weather can change the amount of medication you take. I try to leave for many months of the year to spend time with family or friends in warmer climates to make it easier to move about and live with Raynauds, and being so cold. I am lucky that I am retired and I can do this. If you want to click on the Medical section above our posts and go to the area of Scleroderma Experts you can go down to SCTC main roster of Scleroderma Centers. I don't know where you live so just look around the medical areas and ask your questions. There is always someone that is dealing with that situation that may have some helpful information for you.
Strength and Warmth,
Sheryl

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#6 kacklebird

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Posted 28 March 2011 - 10:43 AM

Hi Indy,

Welcome to the group. I think you're going to find a lot of helpful info and people here. I don't know what state you live in, but in Maryland there's the Scleroderma Center at Johns Hopkins who has great doctors. Maybe others can suggest places/doctors in their area too.

Take care

#7 Indy

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Posted 28 March 2011 - 11:09 AM

Thanks all for the information. The internet can make you crazy when you read all the stuff out there. I sure feel much better and am not too concerned after hearing your thoughts, which is good. Sounds like I just have common ailments at this time, and as pointed out, can all be controlled with meds and that is a good thing.
Thanks again all.

#8 Joelf

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Posted 28 March 2011 - 11:11 AM

Hi Indy,

In January 2009 I developed a dry, troublesome cough and found that I became breathless walking up a steep hill, where previously I would have run up without a second thought. Prior to that, however, I had been feeling generally unwell and noticed how everything was becoming much more of an effort; also my joints, particularly my knees, hands and wrists were becoming incredibly painful and my fingers were very swollen. To give you some idea, I ran a half marathon in October 2008 and the next day I literally could hardly walk at all....the pain in my knees was excruciating. I was a bit surprised at the time as I had run three previous half marathons with nothing more than a little stiffness in my quads the next day. By the time I was diagnosed in July 2009, I was doing hardly any running at all; mainly because my breathing was being affected and I didn't want to make my lungs more painful than they were. However, I received wonderful treatment and I've now accepted that I can't run the distances any more, or run outside on the hard ground, but I run at least a couple of times a week in the gym where the treadmill is a little more cushioned and I find that works quite well.

Hopefully you will be able to see a Scleroderma specialist and they should be able to advise you that you can still continue running; you may find, like me, that you do have to reduce the intensity a bit. For my part, I'm just so grateful to my consultants for giving me a good quality of life and enabling me to still exercise, albeit at a slower rate.

I do hope my post has gone a little way to reassure you. :)

Jo Frowde
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#9 Sweet

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Posted 28 March 2011 - 11:21 AM

Hi Indy, I wanted to add my warm welcome!! :flowers:
Warm and gentle hugs,

Pamela
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#10 Amanda Thorpe

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Posted 02 April 2011 - 05:58 AM

Hello Indy

A belated welcome to the forums! Take care and keep posting!
Amanda Thorpe
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#11 miocean

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Posted 02 April 2011 - 08:40 AM

Hi Indy,
I have diffuse scleroderma. I was a runner, too, although my runs were 3-5 miles a couple of times a week. One of the first things I noticed was I would get tired, but it wasn't my legs, it was my lungs. Rather quickly, other symptoms appeared. My blood pressure went really high, I'm talking 200 over 120, and I had a crisis where I coded twice and my kidneys failed. I was hospitalized at the time so I was helped immediately, thankfully.

At that time, 2004, the leading cause of death from scleroderma was kidney failure, with a life expectancy of 5 years according to the internet, so of course, I thought I was dying. I found this forum and found others who had long beaten those odds, even with kidney failure. There have been improvements in treatment for kidney disease with faster diagnosis, medications and dialysis and now the leading cause of death is Lung Disease, with a 2-3 year expectancy. I also have had this since 2004 and I am still alive and kickin'! Don't believe everything you read on the internet.

I am so glad you have found this forum and hope you continue to post. It's a frustrating disease, because everyone is different. There seems to be times where the disease progresses, and other times where it plateaus. A specialist will be an asset to your medical team which, unfortunately you will probably acquire along the way.

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