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Scleroderma Esophagus


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#1 kiwimum03

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Posted 19 June 2010 - 11:24 AM

Hi everyone,

just me...............yet again :)

Last month I posted about my purple nails and pressure and pain in my chest which ended me up in the ER.
Unfortunately I am still having problems and am still yet to see the Gastro Specialist.
I have had 17 "attacks" in total since May 12th and have also lost 4kgs (8.8 Llbs), as now every day I have no appetite and can only seem to eat one meal and if I eat any more it will come up.
Also struggling to keep fluids down.

I went and bought myself some electrolyte powder as I have been getting dizzy and very "floaty" feeling. I have booked myself in to see my general practitioner tomorrow to see if they can hurry up with the Specialist.

My question is, do these problems sound like the Esophageal problems one gets with Sclerdoderma?

My eating and drinking problems are daily, and my "attacks" happen randomly.
I can go 4 or 5 days without having an "attack" or I can get them two days in a row.
The attacks still go the same, sudden queer shaking feeling in my esophagus, hands instantly turn blue, right hand shakes, internal chills, jaw locks, then teeth chatter and my tongue doesn't work and I can't form words or talk for about 5-10 mins.
After that I have terrible gag reflex and then vomit intermittantly for up to an hour.
I get pain in my epigastric area and my back.

Totally frightening, but have learnt not to be anxious during these attacks as I know they will pass after 20-30 mins.

Daily I have chronic nausea, no appetite, liver, and upper LEFT abdominal pain.

Okay I am going to stop my ramble now :)

thanks for listening.

#2 Jeannie McClelland

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Posted 19 June 2010 - 02:38 PM

Hi Kiwimum,

All that sounds very frightening to me and much more than what I ever experienced. I think you are doing the right thing in seeing your general practitioner right away and if it were me, I'd really press to see the GI specialist. Let us know how it goes, OK? We'll all be pretty concerned for you and hoping the medics get a move on and get it sorted.

Warm hugs,
Jeannie McClelland
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#3 kiwimum03

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Posted 19 June 2010 - 10:17 PM

thanks Jeannie,
I will let you know how I get on. I had two episodes today where I just couldn't stand up anymore from muscle fatigue and ended up sitting on the kitchen floor, I think I might just need a bag of fluids or something as the electrolytes make me feel sick. Not a fun situation, hopefully the doctor tomorrow will see the gravity of the situation.

thanks again.

#4 Shelley Ensz

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Posted 20 June 2010 - 02:58 AM

Hi Kiwimum,

I'm sorry you're having these attacks and hope you find a cause for them soon. As it happens, they don't sound anything like what I experience with esophageal issues. For example, when I have esophageal spasms, it is just simply that, an esophageal spasm, which I just bear with and it settles down in a short while. It doesn't cause anything else, like jaw locking or shaking. I had some severe gall bladder attacks before I had my gallbladder out, and they were just that, as well -- severe spasms and pain but without all the other issues you mention.

So I guess I'm trying to say that, to the best of my knowledge, scleroderma does not cause this particular constellation of symptoms, occurring together, all at once like this. But you have to bear in mind, I'm not a doctor, and I don't even have a First Aid certificate! In addition to that, I may be wrong -- I often am! So bearing in mind the limits of my qualifications, I'll say that scleroderma t can separately cause things like TMJ, which affects the jaw -- but it would be an ongoing problem not just confined to these attacks, or mixed up with a bunch of other symptoms.

I can't think of anything to do with scleroderma that would cause the mouth to close or be unable to talk, except for a stroke; but then the episodes would be confined to symptoms that are all aligned with a stroke (you'd think?). I'm not certain at all, but I think lockjaw (tetanus) would have hopefully already been ruled out by your doctors, immediately.

Oddly enough, all these symptoms might possibly be accounted for by panic attacks and/or you could be having some symptoms intermingled with a panic attack. There is an increased incidence of anxiety and depression in systemic scleroderma patients, although it is not considered to be a symptom of scleroderma, per se. See: Emotional Adjustment. And it is possible to have things like esophageal spasms or gallbladder attacks (etc.) which then induce an over-reacting deluge of adrenaline by the body.

What I'm saying is, to the best of my knowledge, episodes like you describe do not sound to me like any single symptom of scleroderma, but I am not a scleroderma expert, nor an expert of any sort at all. But I most certainly may be entirely wrong!

Thus I see more doctor visits in your future, to sort everything out and Let us know how it goes, okay? Here's some extra hugs and flowers for you. :emoticon-hug::flowers:
Warm Hugs,

Shelley Ensz
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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.

#5 Margaret

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Posted 20 June 2010 - 03:24 AM

Hi Kiwi ,

Have you tried nitro tablets when these attacks occur? Gareth was given them in the beginning when he was having esophageal spasms. Like Shelley, though, I think it's something else..........don't know what, though. Keep us all posted.

Take care, Everyone.
Margaret

#6 Lynnie

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Posted 20 June 2010 - 11:10 AM

Hi, deary me aren't things awful for you, you are very wise to push for further help and investigation. As you live in New Zealand, is it possible you've been bitten by something and its venom is making you react in this way? You never know it could have bitten you while you were asleep and you haven't noticed. It's just a thought because like Australia you have some pretty weird toxic beasties over there!! I do hope the medics find what's causing all this distress.

Loads of hugs and well wishes to you, let us know how you get on OK? Posted Image
Lynn xx

#7 kiwimum03

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Posted 20 June 2010 - 05:57 PM

Thanks Margaret, Shelley and Lynn for your replies,


I am totally open to any suggestions of what this could be, I guess by writing about it I was hoping someone would read it and go "Oh, I have that too!" , just so I could know what it was :)

I went to the general practitioner this morning and he sent an urgent letter to the hospital for a referral. Finger crossed it goes through soon. He gave me some electrolytes and nausea tablets you put under your gum to disolve in the hopes that I can tolerate more food.
I managed to keep some electrolytes down today. yay!

Lynn, I am pretty sure I haven't been bitten here in New Zealand, but I was in Malaysia over holiday and I managed NOT to get bitten the whole time, except on the last day I got 2 mozzie bites, which were super itchy, but I never had any problems...but that does make me wonder. (I am on antimalarials, so that would cancel out Malaria wouldn't it?) The doctors in the ER were aware that I had been overseas in the last few months though.

I am super tired, so going to have a wee rest now. Thanks again for the replies, I really appreciate you all taking the time to read my post.

Hugs,

#8 kiwimum03

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Posted 26 June 2010 - 01:04 AM

Just a little update, I received a sudden call yesterday from the hospital to go in for a Gastroscope on Monday morning. Hopefully we can get to the bottom of this.

Thanks for all your support.

#9 Jeannie McClelland

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Posted 26 June 2010 - 03:17 AM

Hi Kiwimum,

Good luck with the gastroscope! It's great they could get you in and get it done sooner than expected. I'll be thinking of you.

Warm hugs,
Jeannie McClelland
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#10 Amanda Thorpe

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Posted 26 June 2010 - 08:11 AM

Hello Kiwimum

Excellent, I hope you get some answers soon as what you're experiencing sounds quite awful.

Take car.
Amanda Thorpe
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#11 judyt

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Posted 26 June 2010 - 04:54 PM

Hi Kiwimum,

So pleased to hear you have had a quick response. I am not surprised really, I have always had excellent treatment and quick responses from the hospital. My hospital is North Shore where I see Russell Walmsley and I could not be happier with the attention I get. Auckland City has been excellent as I have told you before but I don't know anything about Middlemore so I am wondering which is your hospital. Sometimes I go to Waitakere when North Shore is too busy but that is not often and once again I could not fault the attention I get.

Look forward to hearing how you get on.

Warm hugs,
Judy T

#12 Snowbird

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Posted 27 June 2010 - 02:45 AM

Hi Kiwimum

I'm just catching up on your thread...oh my, you are going through a lot of things to say the least! I'm do glad you are getting in tomorrow for some tests and I sure hope they get to the bottom of this for you then. Good luck and keep us posted.
Sending good wishes your way!

#13 kiwimum03

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Posted 27 June 2010 - 04:07 PM

Thanks for all the warm thoughts.

I went in this morning (Judy, I ended up at Middlemore in their new Gastro wing, very nice!)

Unfortunately the scope didn't show anything, not even signs of GERD, which I found surprising. So now I have to wait for the biopsies to come back.

I am not sure where I go from here. I have now lost 5 kgs in total, and still have tummy pain, slow stomach emptying and hardly any appetite. It's not losing the weight that I mind about (as I can afford to lose it) it's just the way I am losing it and why.

I do know there are more tests they can do, so hopefully now I am in their system it will move along a bit faster.

Thanks again for your support.

Hugs.

#14 judyt

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Posted 28 June 2010 - 10:52 AM

Hi kiwimum,

Well, isn't that interesting! between us we have now sampled all the hospitals in the greater Auckland area and they have all come up as being good!!

A shame they couldn't find anything to pin your problems on, because knowing can help your state of mind, on the other hand it is probably nice to know there is nothing seriously wrong.

Just a thought from me, I take motilium (domperidone), only one a day in the morning. I didn't think it was making any difference to my gastro spasms etc. but last week I went away to Mangawhai with 9 of my girlfriends for a girls retreat and forgot my domperidone!!!! Never mind thinks me - won't matter!! Ha Ha I won't do that again! I spent the whole time uncomfortable and could hardly wait until I got home to take one.

I used to have cramps across the diaphragm area, gastritis, vomiting and stomach emptying problems, but for the past 8 months I have been symptom free. I know our American friends will say this drug is not available for use for them but I wouldn't be without it now. Of course the down side of all that is that I am gradually gaining weight again. I went down to 55kg and now I am 60kg. 60kg is about 126lbs I think.

Hope you manage to stay well in the future.

Best wishes
Judy T

#15 kiwimum03

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Posted 28 June 2010 - 06:33 PM

Hi Judy,

I have been on Domperidone previously, but unfortunately I can't take it as I have (for some unknown reason) abnormal lactation and prolactin levels. The Domperidone pushes my prolactin levels even further up, into the 3000's, so I can't take it. It did help me though at the time.

It's been about 3 years since I last took it and my stomach empyting has gotten worse, not sure what else you can take for it though?

I tried to eat a bit more today, but it was no use. All I got was a sore bloated tummy, epigastric pain and vomiting and chills. I can only eat crackers or small amounts of plain soup, not that I mind as I don't have much of an appetite anyway.

But I am happy they didn't find anything nasty in the gastroscope, that does ease my mind a little.

Hugs,

#16 judyt

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Posted 29 June 2010 - 03:07 PM

Hi Kiwimum,
That is a downer isn't it, but I don't think Motilium is the only drug available. Bearing in mind that I am not a doctor etc. etc. and I don't know the first thing about lactin and prolactin - and probably never will - if it was me I would be asking about alternatives.

I know how much I hate it when I get those cramps so I do feel really sorry that you have to endure them. I hope you are trying to get some balance into what you can eat, you don't want to find you are anaemic or malnourished in some other way. I was put onto a liquid meal replacement when my stomach was recovering from surgery and I was dead skinny - but maybe you would say that won't stay down either.

We will keep thinking of you and hoping to hear that you find a solution.

Warm hugs

Judy T

#17 kiwimum03

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Posted 29 June 2010 - 08:38 PM

Hi Judy,

I am definitely going to ask the doctor when I see them for my biopsy results about alternatives to Motilium.

I also asked about the meal replacement last time as I am already anemic (I have been for years, which I have been told is due to chronic disease, I have microcytes which are small and pale).

They were a bit reluctant to give me meal replacement as I have been vomiting, but honestly I need something. Even if half of it stays down that's better than nothing. :)

But I have faith, it will all get sorted, hopefully sooner rather than later.

Thanks for your support :)

#18 Sandy B

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Posted 30 June 2010 - 01:47 AM

Hi Kiwimum,

Sorry to hear you are still suffering so much, but glad your doctor is taking you seriously. Stand your ground girl and if you are not satisfied with your results then ask to see someone else. You know how bad you feel and if these doctors had to spend one day in the life of you, they would understand how poorly you really do feel, so don't ever be brow beaten!!!

The past eighteen months in particular for me (although I have had gut problems for about nine/ten years now ) have been a bit of a nightmare with symptoms changing and worsening, although I have to say my symptoms have not been as severe as yours. I had an endoscopy and biopsies a couple of months back which revealed nothing and then a barium swallow last month. Anyway I finally have an explanation for my problem backed up by the xray results from the swallow. Now waiting to see if new meds prescribed by gastro doctor will be the solution to the problem (but trying to get hold of them is a bit of an issue right now, so will let you know how I get on)

Don't give up, if you don't fight your corner, no one else will and hopefully an explanation and help for all of your problems is just around the corner for you too.

Take care, my thoughts are with you.

Sandy B

P.S. Have you tried drinking full fat milk for it's nutritional value, little and often?

#19 kiwimum03

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Posted 01 July 2010 - 05:08 PM

Thanks for your lovely message Sandy,

I am sorry to hear you have been having a hard time with gastro issues too. I do hope your new medication can help.
I have tried drinking milk, but am not having much luck with dairy, it gives me diarrhea unfortunately, I don't know if it is the milk or the fat.

But I will keep chugging along :)

thanks again,