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quiltfairy

New to this disease..

31 posts in this topic

I have had Scleroderma for about 1 year; it has gone slow and my doctor says he hopes it stays slow, but he says "you never know about this." I have trouble swallowing; sometimes stuff just does not want to go down; sometimes it goes down the wrong way, is the best I can describe it. I have a lot of pain and am on medications for it; they only seem to work for me for about 6-12 months; my doctor is trying to get me on a slow release medication that will carry me through the night .

 

I also have peripheral neuropathy and fibromyalgia but my sclero doctor thinks it's more the sclero than fibromyalgia. I had a neck and head injury in 2007 which is what the doctors think caused this when I did not fully recover and then I started to have trouble walking and was falling a lot; my neurologist started looking for answers and I had a lot of blood tests, xrays and MRI's; friends kid me about glowing in the dark!

 

This website gave me an answer about what might be the trouble with swallowing so at the next appointment with my sclero doctor I will talk to him further about it. I did have a test on my throat which showed I have weak swallow muscles; I wonder if this could be the sclero?

 

Many times the only thing that gets me through the pain is my faith and hope.

 

I am a firm believer in education so I have decided to donate my body to the University of Iowa medical school and maybe through this one of the student doctors will find a cure or a way to make us more comfortable. My family is in full support of this.

 

Thank you,

 

quiltfairy

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Hi Quiltfairy,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with Scleroderma, Peripheral Neuropathy and Fibromyalgia and although thankfully I don't suffer with Dysphagia (difficulty swallowing) I can understand how very unpleasant it must be for you. I've included some links to our medical pages to give you some more information about these conditions, which I hope you'll find helpful and interesting.

 

You may find it helpful to print off the relevant medical pages to show your doctor and enable you to explain about your swallowing problems at your next appointment. I do hope that your Scleoderma specialist will be able to help and advise you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Quiltfairy

 

It's not an thing easy deciding what we want when we die so most people don't go there. Being as you have please see our Cadaver Research for Scleroderma resources because there is no longer any need for cadaver donations for scleroderma as the disease process is already known. If you go ahead, before making arrangements to donate, check out what research is being done because 90% of cadavers are used for product testing.

 

However, tissue is still needed in very early stages of disease, and autopsy studies may be done in some cases, especially if the diagnosis was unclear or if an experimental therapy had been used.

 

Sorry to be the bearer of bad news.

 

I lay money on scleroderma being the cause of your swallowing issues, GERD (gastro esophageal disease) is so common in scleroderma. I don't know if you're seeing a scleroderma expert or not, as scleroderma is so complex causing problems ranging from swallowing to joint pain it's a good ides to be under the care of one. You mentioned that you didn't know whether your swallowing problems were from the scleroderma or not, something a scleroderma expert would know for sure. When I say expert I mean someone on the list not a rheumatologist who thinks they are.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I am looking for a scleroderma expert in my area but as of yet I am seeing a rheumatologist until I can find one. As I read things on this site it made me question whether he knew what he was talking about. I will look on this form to see if one is close by;  it is getting hard for me to drive long distances, which seems funny to me as I was a long distance truck driver before all of this started up.

 

Thank you

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I am looking for a scleroderma expert in my area but as of yet I am seeing a rheumatologist until I can find one. As I read things on this site it made me question whether he knew what he was talking about. I will look on this form to see if one is close by;  it is getting hard for me to drive long distances, which seems funny to me as I was a long distance truck driver before all of this started up.

 

Thank you

 

 

Quiltfairy,

 

I understand!  And I am sorry.  I drove 150+ miles every day for so many years, and now Dear Husband has to drive me back and forth to my rheumatologist, about 1.5 hours away.  I am too fatigued to drive home safely after the appointement etc......

 

Is there another rheumatologist in your area you could try?  I saw a sclero expert in the state I previously resided in and found him disagreeable.  But I did hit the jackpot on finding a wonderful rheumatologist from the beginning when I was being diagnosed years ago.  I was referred to the sclero expert by both him and this site, so now I only see him.

 

What makes you question your current rheumatologist?

 

((cyber hug))


Diffuse Scleroderma Diagnosed March 2009

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Hello Quiltfairy

 

I gave the scleroderma expert link in my earlier post. There may not be one on your doorstep but there are some round about you...ish. It is another difficulty we don't need, having to travel miles to see an expert but it is worthwhile, in my opinion anyway.

 

Here at ISN we recommend people see a scleroderma expert because of the intricacies of this disease and how important it to receive the right treatment at the right time. Having heard many horror stories from people treated by rheumatologists who thought they were experts, it's my recommendation too. It is of course personal choice though.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Why I question my rheumatologist? That is easy when I go to see him he looks at my hands and face, looks at my chart and says I am doing fine and I am not going to change or add any medications. My general practitioner thinks I should be on an immunosuppressant and he is refusing to do so; he will not explain anything to me when I ask questions, just says I am doing good and walks out of the room, on the way out he says "come back in four months."

 

I am just plain frustrated; I have had to get answers on the internet and I think I should get some from my doctor.

My general practitioner is great; she is learning with me and I took her some copies of stuff from this site. She said it will help her and she is going to study the site, so she can help me and one other person with the same illness as me. 

 

Sorry to go on ranting and thank each of you for answers. I found out that University of Nebraska might be starting a scleroderma clinic, but I am not sure of that; I am going to call them in the morning and I will let everyone know for sure.

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"I am just plain frustrated; I have had to get answers on the internet and I think I should get some from my doctor.


My general practitioner is great; she is learning with me and I took her some copies of stuff from this site. She said it will help her and she is going to study the site, so she can help me and one other person with the same illness as me."


 


I would be frustrated too!!   Unfortunately you are not the only one that has similar difficulties. Sclero is not common so most doctors have not encountered it.


 


QuiltFairy, can you ask your general practitioner for other rheumatologist recommendations?  If it were me I would go shopping for a new rheumatologist!  Even pull out the phone book or search the local phone directories on the internet, whatever it takes!  I had serious gynecology issues that were blown off for several years, in hindsight I regret being afraid to be the squeaky wheel......  On the other hand, seeing him every 4 months appears he's keeping a close eye on you :)


 


What kind of Sclero do you have?  Systemic or lines on skin?  The treatments for them are different.  


 


I have a relative with fibromyalgia, her rheumatologist gave her something similar to lyrica and it's helped her a lot.  I am not familiar with the lines in the skin type.  If you are systemic I would ask to get baselines on your heart and lungs.


 


KD



Diffuse Scleroderma Diagnosed March 2009

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Hello Quiltfairy

 

Your doctor obviously wants to cure not prevent, okay, except scleroderma has no cure! That's why treatment is usually focused on suppressing the immune system to PREVENT damage and treat symptoms as they arise. Once the damage is done...

 

Apart from their apparent lack of knowledge when it comes to handling a scleroderma patient, if they don't answer questions or discuss anything with you, as it's YOUR body I think you should have a say in what happens with it and, personally, I would ditch any doctor who thought otherwise. But that's just me.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I did look up my rheumatologist. I found out that he does not normally treat Scleroderma so I have to look at other doctors in the area.   I found a few in Omaha who treat Scleroderma  and some in Sioux falls.

 

I am going to ask my dad to check in Storm Lake where my parents, live then if I did not feel like driving home after a visit I would have a place to stay the night.   I am going to talk to my G.P. on Wednesday and see if she knows anything about any of these doctors.

 

My ex husband says he would drive me to Omaha but would not be able to drive in the city.   I have friends there and could take a cab from my friends' or have them drive me from their house.   So I am looking at all of my options.

 

Thank all of you who responded, it helps and gives me other options 

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Hi Quiltfairy,

 

It is absolutely fantastic that you are rounding up support and working out ways to get to an expert.  :terrific:

 

Now all we want is to get you to a real one!

 

Please really do your research in locating a real scleroderma expert.  MANY doctors claim to be scleroderma experts, or are referred to as scleroderma experts by other patients, who simply are not experts, they are more like wanna-be's or maybe even the best option, considering the dire lack of expertise in their area or state. 

 

There are only a few dozen scleroderma experts in the U.S.  If you are finding a lot of them in your area, unless you are on the East Coast of the U.S., that is very suspicious.  It is likely you are finding doctors who are interested in scleroderma, or those who just clicked the box for scleroderma when setting up their online profile, in hopes of attracting almost any new arthritis patient.

 

Many years ago there was a scleroderma expert I heard about. Nobody was better in town, maybe even in the state, people said!  You know what?  He was indeed an illustrious doctor, in many regards.  But on being asked about this more closely, it turned out he had only treated ONE scleroderma patient, ever, in his entire long career, and she had died of it.

 

The whole ordeal was very upsetting to him and he was determined not to take any more scleroderma patients.  He would still examine new patients who were suspected to have scleroderma, but only in hope that they had something else instead, which he could help with.  If he decided they really did have scleroderma, he would tell them straight out that he'd only treated one scleroderma patient ever, that she died of it, and he could not be of any help to them. Despite this, the aura of "scleroderma expert" still hung on him! 

 

We all want you to have better care, and a better experience, than that.

 

Of course, that was many years ago.  Since then, scleroderma has become more understood and much better managed BY SCLERODERMA EXPERTS and our tremendous scleroderma community has been able to network together worldwide, the physicians and patients and caregivers alongside each other.

 

However, your usual local rheumatologists, no matter how absolutely fantastic they are with other rheumatic and even very similar diseases, such as lupus and rheumatoid arthritis -- and no matter how fabulous their bedside manner -- typically see only a single case of scleroderma in their entire career.   And there are many different types of scleroderma. Because scleroderma is so rare, doctors need to take a profound interest in scleroderma in order to attract enough of them to eventually become an expert.

 

And even if a doctor is listed through major scleroderma organizations as being an expert, you should still examine their credentials and ask questions.  How many years, how many patients, where did they study, because there are scleroderma experts and then there are world class scleroderma experts. Even among the very finest, our most amazing and treasured researchers of all, you might still encounter someone with poor communication skills, or that you just don't relate to well, so it is not unusual for scleroderma patients to end up consulting even several of the very top experts before they find the best fit.  See ISN Guide to Scleroderma Experts.

 

Your general practitioner sounds absolutely priceless.  You tell her she deserves and award from us for taking the time and compassion to research scleroderma for you. I'm giving her our first ever Outstanding Scleroderma Primary Care Doctor Award. :great:

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

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Hello Quiltfairy

 

I saw my expert, Prof Denton, Royal Free London, this week. He talked about how my disease did not follow any of the usual patterns of scleroderma (there are a few), that my disease had not read the book! My disease did not start with Raynaud's or my hands, a couple of the usual patterns, it started on my shin. I hate to imagine what would have happened to me with a run of the mill rheumatologist with no dots to connect!

 

Interestingly, at the Free they have hived off the scleroderma patients to their own clinic under Immunology, with a phlebotomist on site at last! This confirms that scleroderma is not a typical rheumatic disease for run of the mill rheumatologists...we're special...really, really special! Oh, for ordinary!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I started a new pain medication; my old one was no longer working, but I feel drugged up on this med. I can hardly move around and driving is not an option, so now I have to pay the bus to get to some place; luckily the grocery store is right across the street.

 

I just don't know what to do; I am out of pain, but I hate this druggy feeling. Sorry for the complaining, I just needed to get it off my mind.

 

I can get around to most places close by with my power chair, thank goodness.

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Hi Quiltfairy,

 

Sorry to hear that your new medication is having unpleasant side effects.

 

It's sometimes worthwhile persevering with a new medication, to see if the side effects settle down and sometimes the benefit of the drug outweighs the side effects experienced.

 

However, if the symptoms still persist after a few weeks, then it might be worth seeing your doctor again, to see if he can suggest an alternative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I have finally got used to the new medication and I finally got in with a rheumatologist that treats scleroderma down in Omaha at the University. Thank you for the answers and the support it is greatly appreciated  :you-rock: that is for all of you that responded. It is starting to get cold around here so I have found all my gloves so maybe the Raynaud's won't be so bad this year.

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Hi Quiltfairy,

 

I'm so pleased to hear that your medication is helping you and that the side effects have settled down.

 

It should certainly help you to be treated by a Scleroderma expert and I'm really hoping that things will improve for you now. :)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you, I am sure things are going to get better. The way things have been going I have been wondering how much longer I can live alone and take care of this house.

 

One day things are going great, the next I can hardly walk and it goes back and forth; this is why I am going for a second opinion. It cannot hurt and I hear that this doctor will work with my doctor here in Mapleton. I see this new doctor on Wednesday, than I see my neurologist the next week; I have two bone spurs in my neck where I had a previous surgery for a ruptured disc . The doctor is thinking that the bone spur is rubbing against my spinal cord and that is what is causing the headaches; it means more surgery but if it helps I guess I am willing.

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Hello Quiltfairy

 

One of the hardest things about scleroderma is living with it! It can be so unpredictable and the only things you can predict are that you will be fatigued beyond belief.

 

One day good, one day bad, one day good one week bad, one month a write off! I would like to be able to say it follows a set pattern, it doesn't apart from it being guaranteed that overdoing it will floor you. Without exception.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

I used to wonder how I would get on when I am older.   Fatigue was such an issue in my life, along with the faecal incontinence which came with my Systemic Disease.

 

I would do what I could to keep fit, having been more active than average in my teens.   I brought up my two children, established and looked after a nice garden.   Did my bit to help out at the children's school, all the usual things.

 

Bit by bit over the years various surgeries and hospitalisations slowed me down but I would always bounce back.   Until February 2012 when suddenly I had a total internal blockage and spent most of a month in hospital after emergency surgery.   From then until today I have never bounced ANYWHERE :crying: .  

My 70th birthday has come and gone, our 50th wedding anniversary is looming and I struggle along running behind while my life bowls on ahead of me.

 

What I am most thankful for is that my dear husband is still well and he holds the place together.   I can do the laundry, prepare and serve our meals, entertain friends when they call and entertain myself (mostly by sleeping!!)    I can still drive the car and take myself anywhere I want as long as that place is easy to negotiate once I am out of the car again.   I am a Quilter and right now I am away on Retreat with 9 of my friends, and even here they have to help me, several of them are over 80!! and they are running around after me.  If it wasn't so ridiculous it would be tragic.   I repay their help by driving them around but I couldn't join in without their agreement.

 

And the other thing is that I know full well that I am much better off than many others on this site.   I live the life of Riley in comparison.

 

I have a plan for the future if the worst happens and I am left on my own, and than involves moving myself to an assisted living establishment.   Definitely one where people have fun and 'do' things.   If I had been on my own prior to this I would already be there, no way would I be coping on my own.    I have no illusions that it is good for me to battle on and try to do more for myself, I can't and I don't want to be a martyr.

 

Good luck and best wishes to all of you

Love

Judyt

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Quiltfairy, have you seen an gastroenterologist yet for your swallowing difficulties?  That is one of my main symptoms right now, and I HEAR YOU. It drives me crazy too!  I am going in tomorrow for an endoscopy to see what they can see.  My doctor said they might do a esophagus stretch.  I have read it is a fairly common procedure, but I'm still nervous because I have never been put under before.  One day at a time.  Keep looking for the best doctors and support you can find because everyone deserves it. 

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I saw the sclero doctor today; there was a lot to take in. He was concerned about the loss of hair on my arms, I am not sure why; he also talked about a bone marrow transplant for lung problems in December. I have more tests to determine exactly what form of Sclero I have; he is doing a MRI on my muscles to check for swelling inside the muscles and a pulmonary function test and also a echocardiogram for my heart. He was concerned about the problems with the muscles and that possibly they are not getting enough oxygen; now I am really scared.

 

I had a driver but I really don't want him again; he talked all the way there and all the way back and he gave me no chance to process all the info on the way back with his insensitive talking about his past jobs. It wore me out worse than seeing the doctor; when I told him I wanted to take a nap in the van I laid my seat back and he talked even louder! I think he just want to hear himself talk. Sorry about the ranting.

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Hi quiltfairy,

 

Sorry to hear that you found your visit to the Sclero doctor today to be frightening.   The sort of things that you describe him talking about, in my opinion, are the things that most of us here are used to hearing.

 

There are many many different ways that Scleroderma can affect us and we are, each of us a unique example.  The thing is to find somebody who knows about all these different things and is prepared to check each and every one out one by one.

 

I have had Sclero for many years as you will know if you have read my other posts and still I am learning about aspects which could be, or are in fact, affecting me.

 

My muscles seem to let me down on a daily basis and still no answer is popping up but I have not given up on maybe finding something that will help.

 

My lung function tests show excellent capacity and very low quality gas exchange.   The Respiratory Specialist's opinion is that my lungs are fine but the blood vessels which are part of the gas exchange are affected so I have to take 3 breaths to get the same input of oxygen as the average person my age.  That is what Sclero does to us and if you know what is going on then we are in a position to accept it.

 

I hope you are able to calm yourself down and wait until the tests have been done and see what turns up, if anything.

 

Best wishes

Judyt

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Hi Quiltfairy,

 

Unfortunately, it can be alarming when you have your appointment with a Sclero specialist; it can help if you are able to take a friend with you and can jot down the salient points, as it can be rather overwhelming at the time. I do hope that your test results will be okay and help him to arrive at a diagnosis and thereby be able to advise you of the best treatment.

 

I'm sorry that you had Mr Sensitive driving you to your appointment and back again; it never ceases to amaze me how thoughtless some people can be, especially as he must have realised that it was a hospital appointment, not a social outing!! It's difficult in those circumstances not to appear rude; perhaps next time, if you have that driver, you could simply plug in your music player and sit there listening to some soothing music, oblivious to his chatter!  ;)  ^_^ 

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Quiltfairy,

 

My goodness, did you ever have a productive time with the scleroderma expert!  In the beginning, it can all make your head spin, can't it?  I know it is alarming to have more questions raised than answered in the beginning.  It sounds like you're going to be in for it, for a spell.

 

I will be sending lots of good wishes your way, and rooting for you as you go through the tests.

 

You could try bringing ear plugs or headphones for your next trip, to and fro. Even if the headphones aren't plugged into anything, nobody will know. I know what it's like to need time to process things. It's okay to do whatever is necessary to claim your quiet time and you have our permission and encouragement to do so.  After all, it looks like you are headed for *lots* of trips so they might as well be as pleasant as possible.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

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Thank you all for your kind thoughts. 

 

My next visit is set up but not with the same driver, my son can drive me and he can go in with me to take notes. He and his wife have volunteered to be bone marrow donors and I am pretty sure that my son will match as he is also O negative.

 

His wife has also volunteered to do anything to help, I think she will be staying at my house and watching after the dogs.  I have a husky mix and Shar Pei and  since I cannot afford to kennel them it would be a great help.

 

My aunt has also given me a solution, she lives about half way between here and there so I could spend one or two nights with her and her husband .

Thanks for the warm hugs, they are greatly appreciated. I am sending some back to you :emoticons-thankyou:  :thank-you: this is the best I could do I could not find

the warm hugs.

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