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Janet A

Sine scleroderma?

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My sincere regards to you all,

 

I am tired, in pain, and struggling. My story is very long and boring. Things went very wrong about 3 years ago. I became particularly ill after my hysterectomy which I thought was the cause of some of my problems. I started losing weight rapidly and developed a lot of Gastrointestinal symptoms. I started feeling the cold all the time and haven’t stopped since. I have a lot of abdominal pain and distension. I feel the food gets stuck in my oesophagus. I feel nauseous most of the time. Sometimes the abdominal pain is so great that even walking or sitting hurts so bad.

 

For a while my doctors thought something has gone wrong during the operation but after a lot of investigation they couldn’t find anything. Eventually one doctor suggested that get tested for a few autoimmune diseases and I was ANA & SCL70 positive. I was referred to a Rheumatologist (one of the few doctors with special interest in Systemic sclerosis and one of the 8 on the advisory board of Scleroderma Australia.)After checking my lungs and heart, etc. she said I don’t have scleroderma because my skin doesn’t show any thickening etc and the type that effects the internal organs such as gastrointestinal system and it doesn’t effect the skin which is called “Systemic  Sclerosis Sine’ Scleroderma”. She said I don’t have it “because it’s very rare”!!! 

 

I have done a lot of research and all my symptoms are those of what she called very rare, so I can’t have that. I tick all the boxes. 

Now, I don’t really care what it is called but it has destroyed me. The pain, exhaustion and all that goes with it has proved unbearable. Nothing seems to help. I have tried all sorts of medications and diets but nothing seems to work for me. 

 

I feel incredibly sad. I feel extremely depressed. I can’t see why whatever it is that I have, rare or not, just end it for me quicker and ends my suffering. I haven’t any direction or support from any of the doctors I have been to in terms of how to manage this thing. Every now and then I might feel a little bit better and immediately I think that it’s all over and start planning and get my hopes up. It doesn’t take long for the whole world to come tumbling down. Sometimes not even half an hour. 

 

I don’t know what to do. I have made my doctors to get blood tests done & check for SCL70 & it keeps being positive. My symptoms persist. I have no hope. No reason to go on. I seem to be forever in bed. Severe Gastrointestinal problems and joint pain in different areas that flare up badly, etc. I am so tired. I don’t know how to go on. I don’t know how to stay positive. I am sick of going to doctors and come out empty handed. Sick of explaining my symptoms to new doctors. I am drowning is an ocean of sadness and despair and don’t know how I can pull myself out.

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Hi Janet,

 

Reading your post made me very sad, because there is hope. My heart goes out to you. 

 

I have to say I'm disappointed in your doctor. Here is a link to a specialist in Australia, and I hope it's different than who you are seeing. If it's not, I would find another Rheumatologist. 

Scleroderma is rare, BUT symptoms vary from person to person. There is no blanket list of things you need to have or tests. I feel your doctor is doing you a disservice . Don't give up, see another doctor that you feel is listening to you and that you can communicate with well. 

 

I will also suggest finding someone to talk to. A trusted friend, a counselor. Just talking to someone can help so much, to wrap our minds around things, and reasons to push forward. 

 

Please keep us posted, and much love to you. :hug-bear:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Janet - one can feel your pain and frustration through your post. :sad:  None of us are doctors but we do have life experiences behind us.  My own son is the reason I am on this site and, like you, he had all the positive blood work, but only internal involvement - no skin issues or Raynaud’s.

 

He did suffer from severe depression at the onset and the doctor told me that the same internal process that is wrecking havoc inside your body also affects the chemicals in your brain.  Your brain is a finely tuned machine - relying on the rest of the body for support, especially your stomach/gut.  He was put on a low dose SSRI and it has helped greatly. You do have a reason to live.  :happy:

 

Also, the first Rheumatologist said sine scleroderma, but the specialist rheumatologist said UCTD - Undifferentiated connective tissue disease.  This does not mean you're not suffering from internal issues and it can be just as damaging internally as sine scleroderma.  Gareth needs his esophagus stretched and opened regularly; it looks like a curly straw from the fibrosis and hardening. It took an additional 2-3 hrs to operate on his neck because the doctor had to *chisel his way through wood*  - his esophagus, throat, and carotid artery had congealed into one hard mass.   

 

He was put on an anti-malaria drug (Plaquenil) when first diagnosed and has been on it for almost 13 years now.  It did help greatly on softening the esophagus and making food go down easier.  The doctor said it was a med to *jump start the immune system*, which seems contradictory to what you would want, but it works, and many on this site take it.  Perhaps, you can go back to one of the doctors and ask for some trial meds and SSRI and plaquenil.  Go in educated on the disease and how these meds may help.   Give them this site information - it has a huge library of up to date medical information.

 

And above all - you have a new family of friends here that you can talk to and will offer support.

 

Take care, everyone.

Margaret

Mom to Gareth,  31y/o, DS/ASD

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You took the time to read my post, kindly, understandingly replied and even looked for a specialist in Australia! So, so kind of you, Pamela and Margaret. Thank you.

 

I had been reading a lot about GI involvement & Scleroderma. Your replies encouraged me to read more  and watch a few presentations by doctors in the US. 

 

I’ve been thinking about contacting a specialist in the US or even travelling to the US and go to a reputable Scleroderma Clinic and look for proper diagnosis if there is one for me. First of all I don’t even know what the medical costs are going to be in the US. Thousands, tens of thousands or even more. 

 

On the other hand, what if there is no cure or treatment for me? I just don’t see a point anymore. Doctors here don’t seem to care really. They see me in pain, they see me having real trouble walking at times, or crying my eyes out from all the pain, etc., but I keep getting sent back to the Psychiatrist. I am on antidepressant medication and to be honest I don’t see any point in seeing a Psychiatrist because I am in pain and I need relief.

 

I am constantly exhausted. I have become a unreliable person. I am afraid of making simple plans because there is a chance that I can’t stick to it. Even when I manage to go somewhere I end up feeling embarrassed and regret attending any outings. I can’t sit for long, I look 7 months pregnant, in such pain most times that I can’t hide very well at all; I feel that I make people feel uncomfortable. I am fed up having to tell people about my chronic pain and everything that is going on. 

 

What if the doctors in Adelaide Scleroderma centre (suggested in your message Pamela) don’t take me seriously because I have already seen a Rheumatologist here in Perth who says regardless of my test results and symptoms I don’t have this condition because my skin is fine and the condition is rare? I don’t know about the US but I believe the Aussie doctors back each other up regardless. They wouldn’t contradict their colleagues. It was such difficult task even to find a surgeon who would be prepared to do a diagnostic laparoscopy, one year after my hysterectomy by another doctor. ( I live in Western Australia not in big cities like Sydney or Melbourne). 

 

I am so lost and exhausted. What do I do next? Where do I go? I have referrals to see a new Gastroentrologist and a pain Specialist. Is there a point? If there is one , what is it? My life has turned in to a complete disaster. 

 

I wish I didn’t have to think and there was someone who could make these decisions for me, find a good doctor, make appointments, do some of the talking even, etc. yep, even those simple things I am finding difficult.

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Would you be able to give me any idea of what the medical cost would be in the US? Roughly? You guys have been through this, I thought you might be able to give me some idea of what would be involved, time wise and cost wise in the US?

 

Thank you again for reading my post and responding to it. 

I whine and whinge and carry on, don’t I? 

Kind regards,

Janet

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I would say that the psych meds they put me on made me want to give up too.  I binned the lot of them and my health improved quite quickly.  A lot of my digestive problems were down to those meds.

I still take a low dose of PPIs which have resolved most of my reflux and swallowing problems and a calcium channel inhibitor which is supposed to help the Raynauds (though I can't see that it's making a jot of difference).

Once the psych meds were gone, I began to feel more positive and decided to fight my mobility problems, gradually increasing my exercise regime from a level where I could barely walk or climb stairs to a level where I am now able to walk several miles and am even beginning to run short distances.

 

Do not despair.  It is possible to fight this disease and many treatments are available, though sadly still a fair way off finding a cure.

 

Keep your spirits up and give it a go.

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Hey Janet,

 

I get the feeling of being unreliable. I always have the best intentions, and frankly 95% of the time, my plans don't carry out. But thats OK. I used to be very hard on myself. Now I figure "it is what it is!"  Nothing I can do about it, other than be kind to myself, and stay on the positive side as much as possible. Which is my natural inclination so that helps. 

 

I know there is no cure for me, but I won't waste the rest of my days, letting Scleroderma be my life. I have Scleroderma, I am NOT Scleroderma. I rarely talk to people about it because most don't understand. But I have a small tribe that literally hears about all of it, and they understand. It's taken me 18 years to get to the comfortable spot. Give it time, don't overthink it, and try to go with the flow.

 

As far as cost, I couldn't tell you about that. Our healthcare is so much different than yours. I have insurance, good insurance, and although I pay the monthly premium, I never have any doctor costs because my insurance pays for it all. 

 

I believe we have at least one member here from OZ, and I hope they see this post, and can chime in, and give you some info. Don't "what if yourself to death" , just take one step at a time, and seek help, and answers one small step at a time. :)

 

I will try to wrack my brain on what the name is of the member from OZ. Maybe we can get you connected.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks Pamela and Dimarzio for sharing your experiences with me, I certainly appreciate it.

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Hello friends,

I’m thinking of contacting a Scleroderma clinic in the US with a Gastroentrologist who has a good knowledge and experience with Scleroderma patients. 

 

While going through the info links I found in ISN, I am thinking of contacting Prof. Michael Brown in Rush University medical centre. 

 

I think I need to get in touch with the clinic and the Gastroentrologist before travelling to the US, so I know where I am going and I might even be able to get some of the tests done in Australia where I have insurance.  

Is there any Scleroderma clinic or doctor you recommend that deals with gastro issues? 

 

I am not doing well at all and I feel I have been getting worse. I really need help. Everyday is becoming such a battle and never ending struggle and I don’t have any energy. Exhaustion is unbelievable. My joints are aching more and the joints in my right hand are getting very sore. 

 

All I am on regularly is an antidepressant. Nothing to help with Gastrointestinal symptoms. Sometimes I feel I am literally suffocating and it’s so scary. 

 

Can you help me find the right clinic for me in the US? 

Kind regards

Janet

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Hi Janet,

 

I'm sorry that your symptoms are worsening.

 

Whilst I've no doubt the consultant you've selected is good at his job and specialises in gastrointestinal problems, we do recommend the scleroderma experts on our list. This is because scleroderma is such a complex disease and really does require a specialist in the disease. I'm in the UK and although I was treated very successfully by a top lung hospital (as I have lung involvement) I was still referred to The Royal Free Hospital as well, which contains top rank scleroderma experts, who are experienced in all the little idiosyncrasies which scleroderma can produce.

 

We do have a scleroderma expert in Australia on our list, so perhaps it might be worth your while contacting them first, before travelling to the US.

 

Kind regards,

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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 everyone,

 

I tried to see a new Gastroenterologist for second opinion regarding my worsening symptoms. My general practitioner had written a referral and had faxed it to him. I was told by his office manager that he was not going to see me. There is nothing he could do for me!! I am in state of shock. He refused to see me outright. 

 

I really feel I need to get out of Australia and get an opinion from a gastroenterologist with some experience with Scleroderma patients and the symptoms or at least someone who is prepared to listen. It might not be scleroderma, might be something else with very similar symptoms. But they need to be up for the challenge.  

 

I feel extremely hopeless, helpless and lonely. No doctor is prepared to help me or even listen to me!!! There isn’t anything to help me with my symptoms? Really? 

 

I am totally distraught. 

 

 

 

 

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Which one of the Scleroderma clinics in the list (in the US) would be particularly interested or good in cases with Gastrointestinal involvements? 

 

I would appreciate a specific clinic or a well known doctor in this particular area. Would you be able to help me?

 

Kind regards,

Janet 

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Hi Janet,

 

As previously stated, I'm in the UK, so I can't give you any first hand recommendations. However, I would say that the scleroderma experts on our list are very experienced in dealing with this complex disease and probably your best bet is to ring a few of their clinics and ask them about the services they offer.

 

You can then decide which one would be the best for your particular circumstances.

 

Kind regards,

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Hi Janet,

 

I'm sorry for your predicament.  There's a few things that you may (or may not) find helpful. 

 

One is that it is of primary importance to get emotional reactions and depression under as good of control as possible (keep at it with medications, counseling and support groups, etc.) because doctors are under oath to "do no harm" and they often construe that telling a depressed person that they may have a serious disease (especially one for which there are few relevant treatments) may be doing excessive harm.  So, it's not unusual for them to patiently wait for the person to be stabilized or have sufficient support before they go breaking more "bad news" to them. 

 

Of course, as a patient, I definitely understand that a diagnosis may not be seen as "bad news" when that is, really, all that you are seeking.  However, consider that a diagnosis on top of depression could be very adverse, depending on how a person processed the information. 

 

So, first off, try to focus on establishing an even keel, somehow.  Also stress is terrible for any condition and especially any emotional and/or autoimmune condition, so treating it is equivalent to also treating the illness, to a certain extent. 

 

Next off, many of the U.S. scleroderma experts only see patients who have already been diagnosed. Yes, I know that is a terrible catch-22!  But, be aware of it and ask about it when you are calling around. 

 

Also, for G.I. issues in particular, there are no treatments specific to scleroderma. Although scleroderma can affect the gut in many ways, the complications are basically treated the same, regardless of the cause. For example, constipation is treated with the usual treatments for constipation. Heartburn is treated with heartburn medications or in some cases, even surgery. Slow motility is treated with motility drugs, etc.  So, the most important factor is seeing that your individual symptoms are treated per standard regimens, if need be.  

 

Another factor is that depression and anxiety can cause severe fatigue, widespread pain and difficulty sleeping, etc. So you can see how doctors would chalk up those symptoms to any obvious emotional ills, first off?  That's why letting go of the immediate quest for diagnosis may actually be the key to getting an eventual diagnosis. 

 

So first off, try to wrap your head around the concept that worrying about the diagnosis is what may actually be preventing you from gaining a diagnosis. Doctors react very poorly to any sort of drama.  They want "just the facts, ma'am". 

 

So, first off, pursue anything that you find calming. Find some slogans to rely on, such as, "It is what it is," "Patients need patience", "I'll get through this."  Find as many sources of genuine support as possible.  Once you see that emotional stability may be the key to an accurate diagnosis, it may make it easier to pursue such serenity...and the coping skills you develop will also help you deal positively with any resulting diagnosis (or even the lack thereof.) 

 

Also make sure to keep a solid relationship with your primary care doctor.  Carefully document any new symptoms.  You can expect some health improvements once emotions are a bit stabilized, and once the dust settles, you can see how many symptoms remain. 

 

Neither you or your doctors are a failure if they have so far failed to diagnose you. I was misdiagnosed and only partially diagnosed for decades. Throughout that time, I comforted myself with the slogan, "The truth will out."  I didn't care what the truth was; I knew I'd figure out how to be up to dealing with it.  Focusing on "truth" puts things back on "facts" and it is facts that will enable any diagnosis, after the emotions get out of the way. 

 

You can do this. You just can't do this overnight. Plan on this being a long term process, to begin restoring your health in every way. Get support. Then get more support.  Try to keep yourself and your doctors focused on the facts, and not on your reactions.  

 

I understand why you've hit the panic button!  But you are going to be okay now. You are going to find some peace, and find a path forward, and it is all going to be okay.  Plus in return you will be able to help others, someday. 


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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Shelley, I do appreciate the info. You are right; I am distressed and depressed. I keep thinking that there might be something they could do about my extreme fatigue, sensitivity to cold, many GI problems that I have and did not seem to respond to meds for my GI symptoms, except one to certain extent, that is. 

I must admit, certain symptoms scare me and I would get a panic attack on top of that. For example, when what I eat feels stuck on my esophagus, or not being able to take steps due to extreme abdominal pain or extreme fatigue, etc.

 

I am scared that these symptoms won’t get any better. It’s been over 3 years and some of my symptoms have gotten worse. We have tried 2 different antidepressants and the side effects make my symptoms even worse. I have gone to doctors begging for relief and help, not only with facts. For example that was very much my first visit to the rheumatologist; I remember telling her that she was my only hope and I was desperate. 

 

Well, after reading your message I can see what I’ve done wrong; taking my emotions and desperation in to their office and basically beg for a cure. Now that I look back, it seems so funny and a bit dumb to go in begging for relief. No wonder when she was organising all the tests for lungs and PAH she wouldn’t even tell me what they were for (although I knew anyway). She would say “I don’t want you to get scared or panic when you go to those places to get your tests done”. But to be honest I didn’t care if I had PAH or not, I just wanted a glimpse of what my body was like, 2-3  years before that, when I had a relatively better handle on things. 

 

Yes, I have gone to doctors feeling desperate, crying and begging every  time. Your reply makes a lot of sense. 

 

I truly appreciate you sharing your experience and knowledge.  

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