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quiltfairy

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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

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

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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