Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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SM/Scleroderma---PLEASE READ

Hello everyone.

Please indulge me by reading this story, and then visiting the link I have provided. This may answer some of the questions some of you may have. Heidi, I know you said that your neuro thinks you may have multiple sclerosis, this could be yet another possibility for you as well.

http://journals.lww.com/jonmd/Citation/1922/04000/Myokimia_and_Muscular_Changes_in_Scleroderma.22.aspx

This link is a part of a longer article. It connects syringomyelia/raynaud's/and scleroderma.

I have been experiencing a roller coaster ride of symptoms, including symptoms that my neuro has told me that they are not caused by Syringomyelia. I have been searching for the answer for close to a year now. Within the last couple of months, my symptoms have become worse. I don't want to bore everyone with a long list of symptoms. What started my search was the fact that my wrists/and knuckles (and now feet and ankles, and one knee) have been swollen now for close to a year.

Long story short, I was sent to a second rheumatologist because my neuro believed these new symptoms to be from one form or another of a connective tissue disease. I saw her, she told me I definately have Raynaud's and she also diagnosed me with undifferentiated connective tissue disease. So, of course, I get online and google everything that I can about all of the connective tissue diseases. It seemed that most of my symptoms closely relate to scleroderma.

I have another appt. with her tomorrow. So, just for the hell of it, I ran a search on syringomyelia/scleroderma. I came up with this article. I wanted to share, just in case any of you are also having inflammatory symptoms, and no one can figure it out. I am going to bring this with me to my appt tomorrow. I hope it is well received.

I know that some of you have also posted that you have swollen wrists/hands/knuckles. This article states that "...Syringomyelia often occurs in connection with Raynaud's disease and Scleroderma..." I hope that this could be the key to unlock the medical mystery that I seem to have become.

I know alot of us have the "burning pain". I have this, along with a symptom that it feels like my skin is taut, and stretching. These both feel familiar to one another, and are caused by two different conditions. My skin feels like it is being stretched due to the inflammation, and no matter how dry my skin is, when this happens my skin, in the affected areas, feels silky smooth, even though it should feel like sandpaper by the way it looks.

I know, went on too long! Goodnight, I hope this can be the answer that I am looking for, and for some of you, as well.