Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Dog Days of Summer


  • Please log in to reply
3 replies to this topic

#1 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 19 August 2016 - 09:10 AM

Hi All,

 

We are just now starting to emerge from the dog days of summer, and a traditional time for our forums to be sort of on vacation. People are enjoying the last of summer, usually a bit of respite from heat, and are getting ready for the school year.

 

It's also an excellent time for members to post any questions or issues that are on their mind, as your posts are likely to receive more time and attention from those of us who are not vacationing or readying for the school year.

 

So, what questions do you have about living with scleroderma? Do you manage Raynaud's now, better than you used to?  Do you have any tips to share for dealing with fatigue? Whatever is on your mind, the dog days of summer are a perfect time to bring them forward!

 

:hug-group:


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.

#2 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,002 posts
  • Location:Pennsylvania

Posted 20 August 2016 - 12:32 AM

Morning Shelley, I don't have any pertinent information or suggestions.  I can share with you a situation I found myself in the past month.

 

A month ago, I went a Podatrist for aching feet and newly forming bunions.  She asked about medical history and I told her dad had RA, mom has gout, son has UCTD and I was told years ago that I have osteoarthritis.  Well, she told me I was getting bunions because my feet are becoming flat due to the arthritis and she wanted to run blood work.  I told her my previous RA panel and ANA was negative 3 yrs ago.

 

Well, the RA panel is still negative but the ANA is now positive; homogenous pattern with nuclear dots.   Being well versed in ANA, I look up and find that is usually seen in (PBC)primary biliary cirrhosis.  Wait a minute; I went in for my feet !  Primary care physician sends me to gastro doc (Gareth's doc) and she assured me it's probably a false positive. I was okay with that, having learned from all of you guys. Anyways, on to additional blood work with complete liver profile, etc.  That did all come back within normal range, thank goodness for that.  BUT, ANA is still positive, this time with speckled pattern!  She has me set up for abdominal ultrasound in two weeks, just to be REALLY sure there is no liver issues.  But, suggested next stop be Rheumatologist IF I have other medical signs of autoimmune disease, which she knows I am well aware of.

 

So, yes to the positive ANA two times, but no to RA or PBC.   And I still have the bunions growing and will have to wear orthotics to slow them down!

 

Take care, Everyone.

Margaret

Mom to Gareth, 28 years old, DS/ASD



#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 20 August 2016 - 05:17 AM

Hi Shelley and Margaret,

 

Margaret, I'm so sorry that you have had worrying blood test results. I do hope that there are no liver problems brewing for you and that your further test results will be okay. I have osteoarthritis in quite a few of my joints, so can sympathise with you and also with your bunion. I have a bunion type formation on one of my feet, but I think mine was caused by a rather large horse jumping on my foot and the doing the "hokey-cokey" before I could get him off!! That foot was never the same again!! :nervous:

 

Shelley, living with scleroderma; it certainly is a most bizarre disease. I consider myself to be most fortunate, as compared with some of our members, I appear to have got off quite lightly.

 

Whilst lung involvement is one of the less appealing symptoms, in my case it was caught early and is now kept more or less under control. I say, more or less, because I recently had to have my second total hip replacement (due to my having to take steroids for scleroderma) which necessitated my discontinuing my immunosuppressants for six weeks before and after the operation. I did have a slight flare up of my lung involvement and my latest lung function test was not quite as good as previously, but it does seem to have stablised again since I've recommenced the immunosuppressants. I had been fooled into a false sense of security, as I had felt so well on my medication and had thought to myself rather smugly that I was set fair for an even easier ride with scleroderma. It hasn't allowed me to get too complacent, as I now realise I'm absolutely okay, so long as I stay on the medication! I am trying to reduce the prednisolone, though, as I don't want to develop avascular necrosis in any more joints; what with having false hips and teeth, I'm rapidly running out of bits to replace! :wink:

 

Whilst other symptoms such as Raynaud's are unpleasant, I can manage them and one of the very best things about having this peculiar disease is that I've met and worked with some of the loveliest people I've ever known, with whom I would never have crossed paths, if I hadn't developed scleroderma. How lucky am I to have found Shelley and the ISN! :happy:

 

:happy-dance-line:

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 25 August 2016 - 02:59 PM

Hi Margaret,

 

I'm sorry that you've had the worry over positive ANA, but I am glad that you were fortified enough to deal with it thanks to your participation in the forums all these years for Gareth. Imagine how much scarier it would all be, if you didn't know about false positives and the importance of symptoms when it comes to autoimmune disease. I hope things go well with the remainder of your tests, keep us posted.

 

Jo, I shouldn't laugh over the horse doing the "hokey-cokey" on your foot but I really can't help chuckling from how you phrased it. Your lively sense of humor takes the sting out of so many things, doesn't it? 

 

I'm also very grateful for the ISN and for the truly marvelous people, both those who help in a million different ways, and those who hang out here. It makes and keeps this a very special internet cubby hole, doesn't it?

 

:hug-group:


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.