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dimarzio

Rheumatologist Answers.

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A bit of a problem because my Rheumatologist is bestie mates with the Scleroderma specialist, so will probably bear undue influence.

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Hi Dimarzio,

 

We do understand to a certain extent what is happening at your house.    It is hard when one has no particular obvious involvement and you just feel awful with nothing outward to show for it.

 

For years I was in your position but with no diagnosis either I was the one who thought I was a sandwich short of a picnic.   I wasn't really until things started happening that suddenly there was evidence that something untoward was going on.

 

My first real symptom after the Raynaud's Phenomenon was sudden and unexpected vomiting of blood.   I felt like a volcano was going off in my stomach for a few hours then woops up came blood.   In ED following that I got a diagnosis of yes of course you have CREST and all of a sudden those who should have known better much earlier started acting helpfully.

 

In my case, since they discovered I have no Peristalsis things in the information and compassion stakes have improved.

 

Now my major problem is the propensity to vomit suddenly and unexpectedly.   Not everybody does that and not everybody bleeds internally, but I do.   I take Domperidone regularly and have done for years and I am convinced it helps but as time goes by even that doesn't keep things under control all the time.  Vomiting whole blood suddenly and without warning concentrates the mind of spectators and more than once has resulted in a trip to the ED in an ambulance with all bells and whistles going and a reception committee waiting in Resus for me.

 

I am sorry to have to imply that somebody in your immediate family may just have to wait to find out what can be going on, and I trust that at that stage it won't be put down to imagination.

 

Best wishes,

Judyt

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What a strange person your wife must be. And the rest.

 

I am new here but have previously been misdiagnosed with and treated aggressively for RA and last year was rediagnosed with Sjogrens - now Scleroderma seems to be making itself known in my hands. If anyone asks why I'm wearing shades on a great day or squinting drops in eyes and saliva stimulants in mouth I explain that Sjogrens means my whole connective tissue system is drying up. When they ask why this makes me dizzy I explain mine is like MS and has gone for my nervous system. When they ask what happened to RA I explain that Sjogrens is a great mimic. When they ask how it makes me so tired I shrug and say it's tiring squirting moisture all the time and being relentlessly dry.

 

When my husband asked what Scleroderma would involve I told him to feel my fingertips and imagine this possibly happening in other parts - not sure where but definitely in my oesophogus and maybe lungs - so he nods and says "so you're dry as sand in the desert and turning slowly to stone then?". Well that's the worst case scenario of course. It could just stay in my fingertips - but even fingertips are important!

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Went for an Echocardiogram today. They say that they can detect pulmonary hypertension from this, but I thought that a more invasive test was required for this.

That's the least of my problems though, as I would be happier if all my friends and family did not think that I was loopy and Scleroderma was just an unimportant minor sideshow.

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Hi dimarzio,

 

I note from another note you have posted that you think your symptoms sharted when you were a child.   I have the same memories.   I was frequently very sick and I know now from my Echo's that I had Rheumatic Fever as a child which was unrecognised.

 

The Rheumatic Fever left me with a damaged Mitral Valve which was picked up in 2003 when I was 59.  At that time I had some irregular heart beats and some Pulmonary Hypertension along with a couple of Murmurs, one of which I still have apparently.

 

Anyway I have acute memories of the aftermath of one of my illnesses (flu like) leaving me feeling quite definitely that I could no longer run as I had been able to before.   We all know that kids run everywhere and nowhere more seriously than in the school playground as part of our games.  All of a sudden I couldn't keep up and I was probably only 10.

 

The next memory I have is of an episode of severe stomach pain which called for a Barium Meal (as it was called then) but I don't remember there being any particular diagnosis after that.   What I do know is that I get that same pain now, which tells me that way back then was when things were happening in my gut.

 

So this ramble is sort of in response to your question about PH being noticeable in Echocardiogram.   I believe so.   After several years the decision was made that the PH was increasing, I had a Right Heart Catheter test in conjunction with a Balloon Valvoplasty, then 5 years later a Mitral Valve replacement.    Apparently my mitral valve was like a stone.   Now I am fine Heart wise, no Ectopic Beats, no AF so I am a happy camper.   Being relieved of the fear of  PH from the Sclero has gone a long way to help me feel happier.

 

I have to say, though, that if I hadn't started getting all the complications with my gut that I would have continued being regarded as a Fruit Loop because I have absolutely no visible skin or joint involvement.   I had a friend staying this week and she started in with the "maybe if you tried to exercise more and walk further you would gradually get fitter" refrain.   There's nothing to see so nothing exists.   I am totally incontinent but do I invite folks to examine my underwear after I have been for a short walk!!!!!!!!!!  No no no!! but that doesn't mean nothing happens.

 

Take Care

Kia Kaha (be strong)

Judyt

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I've always had a supportive spouse so I'm grateful for that. However many friends and family just don't get it. I went to great lengths in the beginning to explain. I gave printed information, websites, had one on one conversations, and with some it just didn't matter. I would get "Well maybe tomorrow you'll be all better", or "It will be so nice when you are over this"  :dont-know:   

My heart goes out to you because when it's a spouse that's a tough one. I know of many marriages that didn't make it through the diagnosis. Sad but true. I do hope she can grow to have an understanding. For the rest... I quit wasting my time. Some will never get it.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I had a bad dose of the flu at 8 years old followed by what was diagnosed as a secondary chest infection, but I knew even at that age something else was wrong. My breathing felt strange, like I was breathing, yet I couldn't feel the breaths going in. This feeling has occured mamy times since and is difficult to describe, but doctors have said that it was all in my mind.

I've had a few episodes where my legs felt strange, all floppy and like they were about to explode.

About 20 years ago, I spoke to general practitioner about mobility problems with my back and he thought it was ankylosing spondylitis.

For many years, In fact since childhood, I've had my eyes go funny, but I was told I was imagining it and I now know is caused by a lack of bloodflow.

So I've thought for most of my life that I was imagining these problems, only now to think that the disease has been with me mildly since an early age or even birth.

No skin symptoms, so everyone says I look fine.

Thinking about it, my mother had similar symptoms for many years before she died, but never had an ANA test, so was diagnosed with other things.

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Also, throughout life, even from the age of 5 or 6 which is about as far back as I can remember, I've been unable to tolerate heat at all.

 

Yet no problems with cold until the Raynauds came about 2 years ago (though, it had been present mildly for 3 or 4 years before that) I just put it down to getting older until it got really bad and that's how and when I finally had the diagnosis.

 

Raynaud's affects me really badly now, affecting my entire legs, eyes, face, ears and nose. Hands are a bit better than they were a year ago though, but I'm not altogether sure why.

The disease is bad enough, but everyone believing that Scleroderma is incidental and of little consequence makes it so much harder to bear.

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Hi Dimarzio, 

 

It's difficult to read your posts as your desperation is palpable. Hopefully you will find that the amazing support given in these forums will help. It's bizarre how some people don't know what they don't know and what's worse, don't want to know. Invisible diseases are tricky beasts. I've dealt with disbelievers for many years in the workplace.

 

The first specialist I was sent to was a physician who had 0 empathy and seemingly 0 knowledge of scleroderma. He would open up his big important looking books and use words I had no access to. At the end of one my sessions (the last, I believe), he said I was lucky I didn't have Huntington's Disease. I believe he found that classic piece of advice on page 32 of the official Bedside Manner Booklet. 

 

I hope you find solace and a way to manage the stress you are experiencing. Life is hard enough without feeling there is no support. 

 

All the best.


Charliehorse

 

Life is better with Jeeves and Wooster

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About longevity with limited systemic scleroderma...

 

Research shows that patients with this disease variant, usually associated with anticentromere antibodies but also rarely with anti-Th/To antibodies, tend to live relatively normal life spans but with steadily increasing disability over time.  The most dangerous complication with centromere antibodies, in particular, is pulmonary arterial hypertension (PAH) which eventually occurs in about 20% to 25% of patients with limited scleroderma.  Most other patients will develop some impairment in lung functioning over time but in most cases will not progress to PAH.  In rare cases, patients develop scleroderma renal crisis, which used to be a major complication, but now if caught early, this is usually very treatable with ACE inhibitors so it is no longer a leading cause of death in patients with scleroderma.


Ed Harris

Scleroderma Education Project

A member of the ISN's Scleroderma Webmasters Association (SWA)

(Only SWA members may post links to their own site in forums posts)

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Hey there Dimarzio

 

After I read I had to comment, yeah I totally have to get in on this!

 

Just a suggestion but have you thought that maybe your wife is scared witless at the thought of you being seriously ill? Fear makes us angry and when she exploded at the prospect of reading in detail what your lives could look like if you were, fear of loss may have been fuelling her anger. She seems in real denial and we've all been there. Who discovers one morning that they can't straighten their elbows, shows their husband and then both goes to work... me and my husband who were both in la la land!

 

As for other relatives, read my blog Crash to see how mine behaved. Sadly but ain't it always the way, my sister and I only started talking again this January because my nephew died.

 

Hope this helps and that you've found another doctor.

 

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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Dimarzio,

 

I had the same thought as Amanda regarding your wife.   Amanda has the small advantage of having a husband who has some knowledge and may I say skill in the field of Counselling but sometimes even I can some up with similar thoughts!!  My children, now that  they are adults, are the only ones who have ever confessed that they think I sometimes have good ideas in this area!!  but they have to because of who I am to them.   The rest of the world continues to think I am a fruit loop who simply doesn't try hard enough. 

 

I remember back in 2005 when my late husband was first diagnosed with a cancer.   I was immediately fearful that we would have very little time left together but I was wrong and we actually had until a couple of months ago.   Sometimes our worst fears are unfounded.

 

The second thing that caught my attention was your comment about the feeling you get in your legs.   I had the same for many years.   Trying to explain how it feels to a Doctor ,or anybody really, just confirms in their mind that we live in cloud cuckoo land. In this case however, I have found that problem has, in the last year or so, resolved itself completely and I have not felt as though my legs belonged to somebody else for a very long time now.    A relief I have to say.

 

I believe you if that is any consolation.

 

Best wishes

Judyt

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Thanks for your kind thoughts everyone. I'm afraid that my wife is simply burying her head in the sand, a bit of a family trait that has reared its head in respect of 3 other family members who have been seriously ill and died over the years. It's very much a case of "don't know and don't want to know" mentality.

 

Choclit, your comments on longlevity are encouraging, though I am concerned with the increasind disability aspect. People can't understand that although I can still do a number of things, the pain associated with doing them can often be agonising, though I do not make to much of a fuss and really have to go through considerable pain to even walk, mow the lawn, wash the car, assemble flat pack furniture, etc.

 

Amanda - I will have a look at your blog later as it sounds like it will be an interesting read.

 

Charlie, these forums have been invaluable to me as a place to share our problems amid the common issues that many of us share and understand.

 

Judy, I am so sorry about your husband but glad that your legs feel better. Do you have any ideas as to what made this occur as it is clear to me that my leg problems are vascular, and I can't see how that could improve, though I do live in hope.

 

My dear wife, although she means well, still denies that I have Scleroderma, even though all the tests I have had are positive and she even demanded a repeat blood test which showed the same results! She believes that I have diabetes, thyroid problems, adrenal insufficiency, gluten intolerance, imagination of symptoms, etc. even though all of the tests have proved negative. If I take certain prescribed drugs, it's the drugs that are making me ill and if I don't take them, it is not taking them that is making me ill. She honestly does care, but believes that my symptoms are all imaginary.

 

Doctors seem to be awful with this illness, telling me that I'm wasting their time and my symptoms are all mental. Not one of them has even apologised for getting it so wrong and plying me with a terrible range of mental health drugs which made the problems even worse until I refused to take any more of them. I remember one general practitioner telling me to get out of her surgery and saying that I had had all the blood tests and there was nothing wrong with me - that was about 6 weeks before someone actually suggested the ANA test which proved the Scleroderma and I am so grateful that she did this test, but unfortunately she has now left the surgery, so I won't be able to thank her personally unless I see her around.

 

The Rheumotologist has confirmed the Scleroderma along with Raynauds and esophageal dysmotility.

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Oh crikey, not it's all in your mind scenario!! I get so fed up with, 'you look ok'. Once I was told that I was a hypochondriac and it made me cry, you can't win, if you try and hide stuff people think that there's nothing wrong, and if you tell them they think that you're being a hypochondriac!

 

What is interesting, in my case anyway, not one of my family and friends have looked into my autoimmune conditions or read about them.

 

Having a 'hidden disability', not everyone with a disability is in a wheelchair, is a very difficult position to be in. None of us have to justify anything to anyone else.

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My wife simply refuses to read anything on the subject because the rheumatologist told her that I had the mild version, so she believes that mild version means virtually symptomless. My son and daughter have done some research, but even they can't convince her that it is nothing more than a minor inconvenience.

Some days I am able to do more than others, but I get fed up with everyone saying "why can't you do this?" or "why can't you do that?" It's as if they go deaf when I answer that I have Scleroderma.

Because nobody has ever heard of it, it can't be relevant. Now a friend has cancer and another recently had a heart attack. Both are now recovering and should go on to lead fairly normal lives. However, people don't understand that Scleroderma is horrible, you can't have an operation to fix it, you can't take a pill to make it go away and it is progressive.

Someone told me the other day that it was only a skin problem when actually I don't have any skin symptoms at all at the moment.

It gets so frustrating and depressing at times, but I am fighting it as much as I can.

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