• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Vee

Mystery Diagnosis

11 posts in this topic

Hi all,

 

I was going to put this in the Den, but pertains to health issues, so here it is.

 

Did anyone watch Mystery Diagnosis lastnight? A pregnant woman started out with cold and flu like symptoms that wouldn't go away, and after the baby was born she continued to have more symptoms. fatigue, profuse sweating,extreme muscle weakness, hand and wrist swelling, prickly feelings in fingers and toes, High white blood count, and elevated cpk(I forget now what that last one was) She even changed insurance so she could see another rhuemotolist. Oh yea, she was even diagnosed with ILD (interstitial lung disease), which immediately took me to sceroderma. I knew it had to be something with the immune system. Well they finally diagnosed her with Polymyositis, which they said literally means many muscles immflamed. She had been on and off of our dear friend prednisone, which helped a little, but as we all know can have severe side effects. They finally put her on imuran and methotrexate. Now, 5years later, she is doing very well. Not back to normal, but functioning again.

And then this morning I see Jude put up a post about Polymyositis. I think I had the beginnings of this, when I was pulled off of the cyclophosphimide last year. She described that muscle weakness exactly like I was feeling. Thank goodness for todays meds.

 

Like a dr. at a conference I went to once said. If ever there was a time to have such a horrible disease. Now is it! Because of all the new and upcoming treatments that we have that they didn't have 10 years ago.


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

Share this post


Link to post
Share on other sites

I taped it & getting ready to watch now! I didn't think I had the right episode but I'm sure it's the right one now. Thanks!


Soft hugs your way,

 

Michele

Share this post


Link to post
Share on other sites

I hope everyone saw the announcement last week about this broadcast. Thanks to Patty for sending the info to get it on the forum. Like Michele, I taped it because it was past my bedtime. :)

 

Once again - it's amazing how both stories showed how people with serious problems have to deal with the diagnosis guessing game. I guess it's understandable to a certain extent because the start up symptoms can be so different. I developed polymyositis simultaneous to scleroderma and my first symptoms were muscle weakness and "pneumonia". All the pulmonologist did was do a HRCT every 3 months. No tests - not even bloodtests! Both he and my primary care physician attributed the problems to age and weight. Of course after losing 60 pounds in 4 months, all the lung doctor did was congratulate me! It was the rheumotologist - 8 months later - that ran the bloodtests and had a pft done! Amazing. Needless to say, both the primary care physician and lung doctor are history.

 

Great show!

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi,

I just checked their website and it will air again on friday, the 20th at 7pm and Saturday, the 21st at 2am for all you night owls. :)

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thanks Lisa!! I missed the first run thinking I didn't get that station and DUH on me I do LOL.


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

Share this post


Link to post
Share on other sites

Hey Sheryl - it's only on Discovery Health so far as I know and it's on EST 7:00 Saturday 10/20 and Sunday at 2:00 AM and again 10/28 at 1:00 PM. There's also some issues about "The Woman Who Craved Pickles"!!! Imagine that one!!!! Anyway, hope that clears up the times and of course, they're all EST or are we EDT? Another question, hmm.....


Soft hugs your way,

 

Michele

Share this post


Link to post
Share on other sites

Sorry... just trying to keep you on your toes!! Just kidding, brain fog on my part. That's what I get for trying to do twenty things at once. :)

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now