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tngrits

Hi Everyone! Important Question

9 posts in this topic

It has been a while since I was on here. Seems like it has been one problem after another the past few months. I was in the emergency room last night and was fully expecting surgery for appendicitis. Turns out that was not the problem. My spleen is enlarged and the scleroderma is the culprit for my intestinal woes. I was wondering if anyone else has experienced a problem with the spleen? Really need some help on this one. Thanks.

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Hi Tngrits,

 

I'm sorry your spleen is enlarged and causing problems. Your doctor will have their hands full narrowing down the possible causes of the enlarged spleen. Usually, I think infections are a more common cause of this than other things. Only when all the usual things are ruled out, can they lay it at the feet of scleroderma, as of course they need to make sure you don't have infections, cancer, or have suffered an abdominal injury, etc.

 

So I imagine they ordered you to follow up with your regular physician? Let us know how all the tests go. I'll be thinking of you and sending good wishes your way!


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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Hi Tngrits

 

I can't help with that question but I also wanted to say I'm sorry to hear you are having such difficulties. I also wonder if they did the other tests that Shelley has mentioned to rule other things out? I hope the pain is subsiding for you today and they are helping you with that. Keep up updated ok.


Sending good wishes your way!

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Hello Tngrits

 

Sorry it's been difficult of late for you and I hope you get to the source of the problem quickly.

 

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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Shelley, Snowbird, and Amanda - Thank you so much for the help. The emergency room doctor was so nice and listened to me better than any doctor has in quite a while. He was as surprised as I was when it was not appendicitis or kidney problems. He said the enlarged spleen shocked him and he seemed to be very concerned. I have an appointment with my regular internist Tuesday so I am hoping to get some answers. I don't want him to just ignore this or chalk it up to scleroderma without investigating further. Also, I am going to call my health insurance company about seeing a scleroderma specialist. The closest one is in Alabama. The insurance is a HMO so I don't know how much luck I will have but am going to try my best. Hopefully I will get to feeling better and can get on here more often. Reading the posts on here always makes me feel better. Hoping everyone has a good week.

Linda

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Hi Tngrits ,

 

I am sorry that your spleen is swollen but curious as to whether you have been tested for mono recently? For some reason, mono in an older person, can really wreck havoc on a spleen and it isn't always a younger person's disease. Hope you're feeling better soon.

 

Take care, Everyone.

Margaret

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Hi Tngrits,

 

Sorry I may be a bit late for you to see this before you leave again for the hospital on Tuesday. But I had a very enlarged spleen in 1996, It was 8 times its normal size, and I was in hospital for 3 weeks while a team of doctors (similar to 'House' on the tv) worked my blood every day and eventually said I had Sarcoidosis in my spleen.

 

This resolved with high dose steroids decreasing over 3 years.

 

It is unrelated and just bad luck that I now have diffuse scleroderma as well.

 

When I'm run down or fighting any illness, my spleen gives me a dull pain and fatigue, but managed with painkillers.

 

I hope that you find yours is only temporary, and you are soon well again.

 

The others are correct in saying it is usually related to an infection and quickly resolved.

 

Sending positive thoughts your way.

 

Good luck,

 

Debs

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Hi Linda,

 

I was surprised when I read this, because I have a friend that has scleroderma and she was just informed by her doctor that her spleen is involved. I can't remember the specifics, but I know she has an upcoming appointment. If I learn more about any explanations or treatment her doctors give her I will try to share what I can with you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I'm sorry to read that you are having such problems and had to go the ER. That's never a fun trip; however, it does seem like you found a doctor with good ears. I haven't been able to find a whole lot out there about spleen involvement with scleroderma, in fact, I can't find anything of significance. A few years back I had a torso CAT and the report mentioned calcification in the spleen. My rheumatologist said it was due to the scleroderma and since it was calcification, that would make sense. I haven't had any problem (that I know of) due to it, so we have just let it go so we can concentrate of the those problems that do show symptoms. Obviously, if your spleen is the cause of your symptoms, then it needs to be addressed. How did your appointment go with your internist yesterday?

 

Good idea about seeing a scleroderma specialist! Hope you're insurance comes through to cover it.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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