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More problems, any solutions?


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#1 canon

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Posted 10 September 2008 - 06:46 PM

For the past 2 weeks My legs have changed. It started with one painless swollen foot. The swelling went away when my foot was elevated but of course it came back. Each time it came back the skin and some veins were more pronounced with redness. My GI doctor and primary doctor gave me a quiet lecture on clots all though the presentation was not the normal. I have never presented with what is considered normal. When I took my shoes and socks off so my primary could compare each leg my feet were all shades of blue, red and white. She was somewhat horrified and I was surprised. By this time there was slight swelling in the other foot. I have raynaud's in my hands but now it looked like it was in my feet. My primary knows I have scleroderma and + anticardiolipins sometimes. The doppler study showed no clots. My primary doctor/nurse called 2 consecutive days in a row to see how I was. No has ever done that before so I got concerned. I thanked her each time and then asked, am I not supposed to be working and her answer was no not much. Work and I worked out a solution and I finished my documentation at home each afternoon instead of in the office so I could keep my feet up. It does take me awhile to process things when they happen so fast.

I saw my rheumatologist yesterday. She was quite concerned about my legs and what was happening. They had also become quite painful. She said that there are 3 things going on, actually 4. I definately had raynaud's now in my feet. The red blue was in net pattern on my legs and arms which she said was livedo riticularus and the swelling and skin tighening was scleroderma. The other problem was my bursitis in my hips especially the left. She said that my body temperture was extremely cold. I have lost more weight and the pounds are dropping fast. Of course the gi problems don't help. So she has increased the methotrexate to 25mg/1ml every week, started nifidepine again and gave me a shot in my hip and that was a relief. She also ordered the labs, this time for anticardiolipins again, aps, diffuse, scl 70, which I thought she had done before but did only for limited scleroderma, centromere and many others. The rheumatologist wanted me to go on partial disability for my legs. I said no because my job is a great job and not physically demanding and I can put my feet up and go home to document. She said ok if I can trully do that and I can most days.

My thought is depending on labs if they are pretty much normal, I think they should be paying closer attention to the lung nodules. I don't like them being there, don't like them in my stomach or liver either. I don't have to worry about the ones on my hands anymore. I see my pulmonologist in October and she will do another cat scan after the appointment. Some of these things can be seen in cancer not just autoimmune diseases. It seems so complex. I have like 6 or 7 doctors and I need to trust some of them right now. Am I being neurotic? Am I throwing caution to the wind?

It's a long one again but I am getting more and more lost with whatever is going on. Thanks.

Judy
A happy heart is good medicine.

#2 Sweet

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Posted 11 September 2008 - 11:09 AM

Hey Judy,

Goodness, you have a lot going on. I don't think anyone is being neurotic when they question or wonder what is going on with their body. My suggestion to you is to put all your thoughts down in writing, so you can remember them when you talk with the doctors and ask questions and keep asking until you fully understand what is going on. I do think we need to trust as well to a point, but if your gut is telling you something, listen.

Best to you!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#3 canon

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Posted 11 September 2008 - 12:25 PM

Thank you Pamela,

I actually went with a list of questions the other day and remembered to look at it this time.

Judy
A happy heart is good medicine.

#4 smac0719

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Posted 12 September 2008 - 09:34 AM

Judy,

You sure are going through it right now. I agree with Sweet that you keep as detailed of a medical diary as possible. I'm glad to hear they did the sono on your legs for clots. That was my first thought when I read about your swelling. I don't have anything to offer in terms of the pulmonary question, but I think keeping all your doctors informed of what's going on wouldn't hurt. I hope you get some relief soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#5 canon

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Posted 12 September 2008 - 02:54 PM

Thanks smac,

The shot for the bursitis has helped alot. I'll have to start wearing socks and long pants again to keep myself warmer. Not sure if I can fit my feet in the parrafin bath for the raynaud's but I will try, it works for the hands and it might work on the skin changes too.

Will have to wait and see with labs.

Hope you are doing well,

Judy
A happy heart is good medicine.