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Any of my weird symptoms sound familiar?

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#1 Avalanche



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Posted 22 April 2009 - 07:41 AM

Hi everyone-
I've been lurking for a while, hoping that I don't have Sclero, but not quite being able to rule it out, or figure out what I have.. It's a short but long story.

Just to preface this by saying before this I was active (hobby was figure skating) and I really never was sick other than the odd cold- travelled to Hawaii twice last year, and didn't have any aches or pains to speak of. I am 52, and in the middle of menopause, so I do get hot flashes, but this is different.

In August 2008, I had sciatica that lasted for 2 months- I had surgery at the end of October to remove a 10% piece of the L4 disc that was compressing the nerve in my right foot. I had a great surgeon, and was feeling great after the operation. I still had some numbness in the foot, but he said it takes a year for the nerve to heal. The odd thing is, I had some tingling on and off in my genital area, but I figured that was just from the nerve. I was in physical therapy, and everything was going great, until the middle of January. After a particularly cold day, I had three toes on that foot become red and inflamed, and a few days later, a toe on the other foot did the same thing. I went to my general practitioner, who sent me to the rheumatologist, who said it looked like primary Raynaud's. She did a nail fold test and bloodwork. Both were fine.

The only problem is, the toes never went back to normal when they were warm, in fact they swell and turn dark red/bluish when they are hot and moist (They are not tight or shiny). They are NOT my feet!! In the meantime, I got it in my hands, and they look so strange- in fact, my whole body looks different 3 months later. I used to always have nice tan color (I spent 3 weeks in Hawaii painting) but now I am pale, pinkish mottled.

I then started to have horrible nightmares that something was really wrong with me- I often feel like I have chills, but no fever, and my stomach has been in a knot, or like I have butterflies constantly. I have no appetite, which is unusual for me, plus I can't sleep. (Also unusual) I now have muscle pains, and lots of paresthesias- my rear end throbs just sitting down. The worst is my feet- they are swollen, unless I walk around in flip flops, and wearing socks and sneakers is almost unbearable. I think I have some symptoms of Sjogren's (recent dry eyes/mouth, ringing in ears and sensitivity to noise and sunlight). Then last week I got the fatigue- I barely can get up, and am not functioning well at all.
Then I had trouble swallowing, but maybe that was anxiety, since it seems to come and go.

The rheumatologist saw me again in March, she still says nailfold looks perfect, and I don't seem to have hard or swollen skin on my fingers.

Did anyone here present with chills/ stomach ache first? And I still don't know what's up with the feet- I've been to 2 GPs, an orthopedist, rheumatologist, and vascular surgeon (circulation is perfect) Tomorrow I see a more experienced rheumatologist and a neurologist.

Also, did anyone have negative ANA and nailfold test and still have Sclero? Also, can it develop this quickly (3 months)?

Thanks for any input

Adrienne AKA Avalanche

#2 Amanda Thorpe

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Posted 22 April 2009 - 11:16 AM

Hello Adrianne

Welcome to the forum, glad you've finally posted.

I have a negative ANA and as my Raynaud's is mild my nailfold test showed little damage/changes in addition my sclero started on my right shin as a waxy patch. It then rapidly progressed over a 6 month period in which I went from having a mark on both shins to being virtually unable to walk or use my hands.

What I can't tell you and unfortunately neither will anyone else here is whether you are developing sclero or not. Hopefully the more experienced rheumatologist may be able to give you some answers, failing that can you be referred to a sclero specialist, details of which are on this site.

Initially wait and see what experienced rheumatologist says and take it from there. Make sure you go to the appointment with all symptoms written down and your questions. If they say a symptom isn't sclero then what is it because it must be something else!

Trying to get a diagnosis, whatever that may be, is a hard place to be as many here can confirm but it sounds like you're doing what you can to get one.

Let us know how you get on and take care.

Amanda Thorpe
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#3 Shelley Ensz

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Posted 22 April 2009 - 12:06 PM

Hi Adrienne,

Welcome to Sclero Forums! I'm sorry its because you have medical issues to deal with. I hope the appointments tomorrow will provide some answers or help.

Scleroderma and related autoimmune diseases are not easily diagnosed, especially in the absence of major symptoms or test results that help separate the illnesses apart. Perhaps you can relax a little, knowing that you now have a place for understanding and support.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#4 Jeannie McClelland

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Posted 22 April 2009 - 12:27 PM

Hi Adrienne,

I wanted to welcome you to the Forum too. We're a pretty understanding bunch of people and most of us have a "been there, done that" T-shirt in the closet.

You must be incredibly frustrated with not having a firm diagnosis. That's such a common situation to be in, but knowing you've got lots of company doesn't help at all, does it?

Will you let us know how your appointments with the more experienced rheumatologist and the neurologist go? I'll keep my fingers crossed that one of them will take a look and yell "Eureka, I know what it is!"

Once again, welcome and warm wishes,
Jeannie McClelland
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#5 Avalanche



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Posted 22 April 2009 - 01:13 PM

Thanks everyone-

I think I am looking for more than a diagnosis or explanation of what's going on- I really need some relief. ..which I guess I need a diagnosis for, so I can be steered in the right direction.

The rheumatologist I am seeing was on one of the US top doctors lists, so hopefully he'll have an idea. He's also been in practice for 28 years, so maybe he'll have seen what I have. The neuro also comes highly recommended.

I'll post if there's anything concrete

#6 jillatk


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Posted 22 April 2009 - 04:54 PM

Welcome to the forum. Sorry you had to find us, but glad you found us. Getting a diagnosis is half the battle. You can read lots of horror stories of people getting anything but a clear diagnosis. This is a strange beast of a disease that gets manifested differently in each of us. Sounds like you are going to see a well qualified professional, and hopefully that doctor will be persistent until he/she gets to the bottom of your symptoms and can get you some relief from your symptoms. There are good treatment strategies out there once you can get someone to listen to you and start addressing your symptoms.

Good luck tomorrow.