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Thanks To Everyone Who Replied

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#1 catherine parker

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Posted 03 January 2007 - 04:31 AM

I am really touched by the messages I received showing support; it made me cry. Since I posted last week, there has been a new development in my condition that I don't know is related to scleroderma or not. On Sunday morning I woke up with no feeling in my left foot, sort of like pins and needles. It scared me so I called my family doctor, who sent me to the ER. They did an ultrasound looking for blood clots and found none. I have been limping ever since. When I went to the dermatologist yesterday, I told her about it and she thought it may have been a clot that dissolved by the time I got to the hospital and that's why it didn't show up on the test. I went to my family doctor after the dermatologist who is stumped but doesn't think it's related to the scleroderma. While I was in his office, he called a neurologist who suggested a medication for me called Lyrica and for me to get an EMG test in the next three weeks. I'm feeling miserable because now I have limited use of my right hand because of the ulcer and I'm walking with a limp, which is also slowing me down. I was prescribed nitroglycerine ointment for the ulcer, which is supposed to get the blood flowing to the finger, and the doctor said it could take up to two months for it to heal.
If anyone has had anything similar with the numbness, I would love to hear about it. Again, thanks for all the messages. I'm at work now, so I can't respond to everyone individually, but soon I'll get back to each and every one of you.


#2 barefut


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Posted 03 January 2007 - 04:50 AM

Many years ago for no aparent reason I lost complete mobility of my right toe for about a week. It was so strange. I could stare at it, telling it to MOVE and it just sat there. Oblivious. It wasn't numb. And of course by the time I got into a doctor, it was back to normal. Yes, I am a medical mystery at times it seems. Or else just crazy. I haven't figured out which yet.

I have also had patchy areas of tingling and numbness in my arms, legs and feet. When I mentioned this to my doctors, along with all my other strange symptoms, they have never been too interested in it. I have never gotten any answers. It is not a real bothersome thing, just weird.

I'm sorry yours is causing you a limp. I hope you get to the bottom of it and that it is nothing serious. Keeep us posted.

Take Care,

#3 Elehos


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Posted 03 January 2007 - 05:21 AM

HI Catherine,

If you don't have time to respond personally, please don't worry about that! I've had long standing spinal problems, so I can give you some thought on what might be happening, but only your doctor would know for sure...

Herniated discs sometimes cause more problems with the feet or legs than the spine--I've had 5. The doctors always gave me anti-inflammatories and muscle relaxers, and it's generally a better option than surgery unless there's extreme pressure on the spinal cord or nerves to the legs.

Pinched nerves in the lower spine, sometimes just from moving the wrong way. I can lift 40 lbs. straight up and be fine, but a very slight lean to grab a pencil can have me out of whack for weeks on end. My chiropractor takes care of this quickly! You can also get pinched nerves in your ankles, or any joint really, and I hope it's something as easy to fix as this!

Spinal stenosis, which was there for 23 years before it was removed, started with a crawling bug feeling on the back of my leg, but can affect the feet depending upon where it is. It's generally a slow moving condition, so even if it turned up, don't panic, especially if it's mild. I still have it in my neck, C3 through C7 but the surgeon is leaving it alone for now.

Tendonitis can cause numbness and weakness, and I've had some problems with my right shin and right arm on and off for several decades. The doctors tell me to use moist heat, simply a warm washcloth and a hot water bottle, and keep on with the anti-inflammatories, and it eventually settles down. My tendons have gotten downright stupid during the past couple of years with the sclero (lol), but it wasn't an overnight change.

Sometimes it's hard to remember doing anything in particular, like a sudden movement, or even having to move differently due to the sclero, but I've usually found that the numbness in my hands or feet is from something like that, and is generally easily remedied--it just takes patience. As I said, I truly hope it's something easily fixable, and it sounds like having the EMG is a step in the right direction!

Best wishes to you,

#4 Sweet


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Posted 03 January 2007 - 05:43 AM

Hi Catherine,

Elehos, gave you good information about the spine. I know at times, I have tingling and numbness in my arms/hands due to my back needing adjustment.

There was one time though that I had something very similar to what you are describing. My primary care doctor couldn't figure it out, my rheumatologist couldn't figure it out, they sent me to the neuro doctor where I had nerve conduction studies done and what it turned out to be was a mild sensory only type of Guillain Barre Syndrome. Over time it improved by itself without any medications or treatments. Might be worth dropping that little tidbit in your doctor's lap.

I'm glad that you feel you have support here, we need each other!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 catherine parker

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Posted 03 January 2007 - 05:46 AM

I used the word "weird" to describe it, too. At least there is someone else out there who has had something similar so I know I'm not going crazy. My family doctor called me a "good case," meaning that things happen to me that he's never come across before in 20-something years of practicing medicine. Do you wish the medical schools would teach more on the illness? Sometimes I get angry that other life-threatening diseases get so much publicity, but then I catch myself and realize other people are going through a lot, too. I was diagnosed in April of 1998 and it hasn't been too bad until now. I guess I should be grateful because other scleroderma patients have had it a lot worse than I have. I am trying to be positive. With Divine help, I'll get through this recent episode. Thanks for replying so quickly.


#6 Heidi


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Posted 03 January 2007 - 08:09 AM

Hi Cathy,

Just wanted to add my two-cents: I get that numb, tingling, pins and needles feeling a lot in my hands and arms (sometimes my feet, but not as often). I was told that it was peripheral neuropathy and my understanding is that build up of collagen (from the scleroderma) under the skin can push down on the nerves causing this problem. My rheumatologist has prescribed neurontin for the problem and it has relieved A LOT of the overwhelming pain that made it impossible for me to sleep, but has not gotten rid of it completely....but it doesn't really impair my functioning so I can't complain. Last January he switched me from neurontin to Lyrica to see if that would offer me more relief but I could not tolerate the side effects. I do hope the Lyrica will work for you. Lyrica is a medication originally developed to address the nerve pain that accompanies diabetes.

Please do keep us posted on how you are doing.

Warm wishes,

#7 Piper


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Posted 03 January 2007 - 11:10 AM

Hi Cathy, I was just diagnosed with peripheral neuropathy like Heidi. My first 2 toes are completly numb and I have pain in my whole leg that was waking me all night long. My Dr. said mine was caused by the arthritis in my hip and knee. He gave me elavil to take at bedtime and it is wonderful in helping the pain.I also have carpal tunnel in both hands. Hope you find something to help.
Hugs, Piper

#8 LisaBulman


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Posted 04 January 2007 - 02:45 AM

Hi Cathy,
I get the same feeling in my feet and hands. I told my dr and he said it sounds like neuropathy. He said I could have the tests done again but since he won't put me on any meds right now because of my liver, I didn't bother with the tests.

Ask your dr about viagra or cialis for your circulation and to heal up that ulcer. It would probably work faster than the cream.

Piper, becareful with the elavil. I didn't know that I had a heart arrythmia and when I was put on elavil, it caused many problems and I ended up needing a cardiac ablation.

Lisa Bulman
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Posted 06 January 2007 - 05:35 AM

I have the tingling also. I was told it was peripheral neuropathy. I tried neurontin, but I hated the side effects. I now take Lyrica and it works wonders. The tingling can be very disconcerting. I have even felt it in my face - such as my forehead. Boy was that creepy!