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Snickerdoodle

Think I'm new here

8 posts in this topic

I was thinking that I had joined this message board before, but it seems I haven't. I was diagnosed in 2001 with severe Secondary Pulmonary Hypertension, second to CREST. Have had some what of a reprieve for several years, when in the beginning it came on like gang busters. Now it's starting to rear its ugly head once again. Shortness of breath, inability to stand very long, breakouts on the legs with a pattern of calcinosis through the calves more so on left leg than right.

 

I've never heard or seen anyone talk about the calcinosis on the legs, and was just reading that calcinosis on the extremities, arms/legs is usually conducive with calcinosis in the brain. I do have lots of memory problems, and a foggy mind regularly. Anybody else dealing with this at this time?

 

Thanks for replying.

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Hi Snickerdoodle,

 

Welcome to the Forum. I've just checked our database to see if you have been here before and it appears you haven't, so you get our special First Welcome which comes with warm wishes and hugs and many new and sympathetic friends.

emoticon-hug.gif

 

I'm so sorry your disease is on the move again. That is a real shame.

 

I haven't had any experience with calcinosis myself, but I understand that it can be very painful. We do have a page of information here and as it says, calcinosis can unfortunately occur anywhere. Has your rheumatologist referred you to a neurologist for evaluation? I'm sure a lot of us would pop up and say yes to having memory issues and the wretched brain fog and the reassuring thing, I guess, is that many, many things other than calcinosis can be the cause.

 

I hope you'll post often and let us know how things are going.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Snickerdoodle

 

Welcome to the forum! I am sorry Mr Sclero O Derma has gatecrashed again. I have never had problems with calcinosis but plenty on this forum have and they'll no doubt chime in. Now brain fog I do know about! I have only had scleroderma for 3 years but I have brain fog everyday, whether it's walking into a room and wondering why I went into it or struggling to find the right words, it's always something!

 

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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Thank you both for your replies. This seems to be a very organized site, and a good message board as well.

 

I really couldn't get into the other message board, as most posters were encouraged to ONLY speak positively...and well, its hard to get information out of anybody when everybody is living in la la land. So, I didn't post more than once or twice there.

 

Thanks for giving me info and a link to more information.

 

Hugs

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Hi Snickerdoodle,

 

So glad you have joined our great family :emoticons-yes:

 

Yet, none of us want for anyone to have to be here for the reasons we are. However, whether folks are here due to family members afflicted with the chronic illnesses we cover here, or are themselves afflicted, as you are ---------

 

Found here will be folks who have: Support-ability, Care-ability, help-ability and Share-ability.

 

I have no personal experience with calcinosis either, but Jeannie led you in a great direction, for some information on calcinosis. Then, once you begin to find your way around "here", you'll be able to peek in our 'Medical' and 'News' areas, as well as past threads/posts. In all of these areas, you can find a wealth of information!

As Amanda mentioned, you may well hear from others, but please feel free to post often, in the meantime!

 

We also have CHAT on Sundays and Wednesdays - Under 'Forums', you will see 'Chat' listed and you can click on that to get the time listings for each chat.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Snickerdoodle,

 

I couldn't possibly say anything better than Susie or Jeannie. So I'm popping in to say Welcome to Sclero Forums!

 

You might also want to take a whirl through our Systemic Scleroderma Brain Involvement page.


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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