Jump to content


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


Photo

Scleroderma And Ulnar Nerve


  • Please log in to reply
7 replies to this topic

#1 Patty1

Patty1

    Senior Bronze Member

  • Members
  • PipPipPip
  • 38 posts
  • Location:Massachusetts

Posted 05 January 2007 - 05:25 AM

Hi,
I was diagnosted two and a half years ago with limited sclero... just this week, saw my rhematologist with ongoing raynauds issues... she is sending me for a EMG to test for Ulnar nerve compression/issues... in theory, she says they aren't related, but after doing some research,,, it is common with Rheumatic Diseases..has anyone else experienced this? If so,,, how bad is the test? From what I am reading this sounds rather painful. She has scheduled several other tests as well, an Angiogram for my hands to find where the blockages are from the Raynauds, and if the blockages will respond to potentially to Prostacyclin infusion (had this last year) I am very apprehensive about both tests, any insight would be appreciated!
Thanks

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 05 January 2007 - 06:01 AM

Hi Patty and welcome to the forums.

I'm so glad that you found us, you will find support, information and good friendship here.

I'm sorry about your diagnosis of Limited Scleroderma and I hope your doctors will be able to help with your symptoms.

I just recently went through the same type of thing you are dealing with now. The EMG really isn't bad at all, so don't worry about that. However, what my doctors found out is I had "Thoracic Outlet Syndrome" . You can google that and get all the info you need. Basically though the scalene muscles in your neck and other chest muscles, get so tight they cut the "outlet" off where your nerves would otherwise flow freely. I've had a combination of treatments for it, such as massage, acupuncture and physical therapy. I have times when it seems totally gone and other times when it really bothers me. You need to do the exercises daily or it will resurface. They say it can take months to correct.

That is just my experience, it may not be what you have at all, but thought I would put it out there. I guess it's easily missed.

Let us know how your EMG goes, I'll be thinking of you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 jlf

jlf

    Bronze Member

  • Members
  • PipPip
  • 19 posts

Posted 05 January 2007 - 06:05 AM

Patty,

I was told in 2006 that I have ulnar nerve compression. My neuro doctor says it can be caused by scleroderma. Look up Guyon syndrome, it is one type of compression which is often caused by calcium deposits. I have compression in my entire left arm, I have not had an emg as yet. The neuro doctor said not to ignore it for too long as it can lead to lose of use and contractures. Hope this helps, have a good day.

JLF

#4 Patty1

Patty1

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 38 posts
  • Location:Massachusetts

Posted 05 January 2007 - 06:53 AM

Thanks Sweet an JFL, that does help, I am allways looking for answers. Part of the reason I get frustrated with this disease. There never seems to be simple answers as to what and why! I am thrilled that I found the forum, I visit ISN on a regular basis, and never knew it was here! I do not know many people with this disease, matter of fact, I only know of two other people whom I have met threw family and worship services.

Thanks for reassuring me about the EMG, needles scare me! I should be used to them by now, but....I have been having numbness down the outside of my right arm into my pinky and ring finger, and thought that it was the raynauds. but my rhematologist said this was different..so hence the EMG.

#5 Elehos

Elehos

    Silver Member

  • Members
  • PipPipPipPip
  • 196 posts
  • Location:Upstate NY

Posted 05 January 2007 - 06:57 AM

Hi Patty,

I've had two EMG's done, and the last one was for my right arm to see if I needed neck surgery or if the problem was elsewhere. My neurologist did the test quickly, and your muscles will contract, occasionally feeling like a split second charley horse, but it doesn't last, and it wasn't as bad as it first sounded. Some moments of discomfort, but it wasn't painful. I think the sound of "electrical current" was was scared me initially, but I need to have another one soon, and am actually looking forward to getting it done!

Sorry, I haven't had an angiogram done, but am pretty sure someone else can give you their experience.

Best wishes to you,
Elehos

#6 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 05 January 2007 - 10:14 AM

Hi Patty,

I too want to welcome you to the forums! I am glad that you have joined us and begun posting, just sorry it is because of being diagnosed with limited scleroderma and now having more problems with your Raynaud's. I am sure you will find everyone here very warm and supportive and encouraging....and more then willing to provide information and advice when we can.

Please do keep us posted on the outcome of your tests.

Warm wishes,
Heidi

#7 Patty1

Patty1

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 38 posts
  • Location:Massachusetts

Posted 05 January 2007 - 10:20 AM

Thanks Heidi, and to all who have responded. My fun begins Monday with pretesting.. for the Angiogram. this is my first..If anyone else has had one for locating the blockages from raynauds, I would love to hear the outcome. What I don't understand is why they are doing this now, I had the prostacyclin infusion last winter without so much ado,, now this year, the doctors are putting me thru the ringer first!

#8 emmie

emmie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 05 January 2007 - 06:16 PM

Hi Patty,

Welcome! Isn't this a wonderful place to hang out if you have to have an autoimmune disease like sclero? I also have trouble with the ulnar nerve. Until I had carpal tunnel release done a year or so ago, I would wake up several times every night with all my fingers and thumb completely numb. The release surgery worked very well for me, so now it's just the ring finger and pinkie. Don't know what we're going to do with that.

I had the emg testing. I found it tolerable, but uncomfortable. However, the findings were inconclusive for me because I have a complicated nerve pattern or some such. thank goodness the dr. went with the clinical symptoms and the tests he did in the office for the carpal. (I tend to be one of those people who don't do much of anything by the book. It's quite frustrating--complicates diagnosis and getting treatment!)

Good luck to you--and let us know what you find out.

xoxo emmie