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#1 Marie W

Marie W

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Posted 17 December 2006 - 09:47 AM

Thanks to everyone who e-mailed me about their meds. I actually left off some of mine. It seems I can't remember anything these days. I have to use a double pill compact which I fill weekly or I would forget to take all of them. Do any of you have difficultly with memory and cognitive thinking? I have gotten really bad the past several months. I am thinking about seeing another Rhemy, one that is a lot younger and more up to date of scleroderma. (the other two are "old") I live in a very small town, there are only 2-3 Rhemys within 25-50 miles. I have to travel approximately 350-400 miles to see a more qualified one. The one Rhemy (he's around 60) said he had only seen about 8 cases of systemic, however he does know another Rhemy at Pittsburg Medical Center and he has consulted by phone with him. At least I feel he is a little bit more informed now. Another question, do any of you have difficulty with burning (neuropathy) associated with your pain. Some of my joints, epecially my feet and toes are affected.


#2 Sweet


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Posted 17 December 2006 - 11:46 AM

Hi Marie,

YES!!! I do have quite a bit of problem with memory/congnitive problems. So much so recently actually that I had a brain CT done. I haven't received the results yet.

This is something you should mention to your doctor for sure. (If you can remember) :huh:
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Elehos


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Posted 17 December 2006 - 12:19 PM

Hi Marie W.,

It's so funny that your question was about cognitive problems, and I tried logging in with the wrong password! Maybe that's the answer to your question right there! :D There are times when it's downright embarrassing, and this past spring and summer were horrible. I had mentioned a while back that it's like playing scrabble with words and trying to form sentences, and I'm so glad my son and husband are patient when those incoherent moments hit.

The nerve pain can be terrible, and in the summer of 2005 I started taking Trazadone (prescribed initially for insomnia), which helps considerably! It doesn't work for everyone according to my doctor, but certain antidepressants can help. They aren't the only meds that can help, but I was sick and tired of using pain medication in ever-increasing doses, and was glad that this worked.

My heart goes out to you, and at least here you will never be alone!

Best wishes to you,