New symtons from Dystonia
Hi I have been diagnosed with focal cervical dystonia about 15 yrs ago. And the dystonia has inc to total body spasming. My voice goes, extreme headaches, problems writing/typing after a little while and all of my symtons have been on the right side until now, I'm getting some of the previously mentioned and listed below symtons on the left side.
Everything I have read says that it stablizes after about 5 yrs. Mine doesn't seem to be, it seems to be getting worse.
1st - And have already had one remission, my first question is can you have more than 1 remission. Through my research only 1 has ever been mentioned. I keep praying to go into remission again but it hasn't happened yet.
2nd question - new symtons - my eyes close on their own and I have to force them open. Again through research I have read that it could lead to blindness is this true?
3rd question - has anyone developed tumors from their dystonia? I had to have surgery this past summer because they found a 6cm (golf ball size) tumor at first oncologist that it was sarcoma cancer but after 3 tests from pathology they decided it was a side effect of dystonia. And I have never read anywhere about anyone getting tumors. Now, I have to see my oncologist every 6 months for a undetermined time and if I don't get anymore than it will move to yearly.
4th question - another new symton - fatigue and pain leaves me in bed most of my day, if luckily I will get about an 1hr a night. But, I have noticed lately that I can be on the softest pillows but at the base of my skull it feels like I'm laying on a metal bar. Not matter how often I re-arrange the pillows it doesn't go away. And when I wear my soft collar it doesn't help it actually makes it worse.
Sorry about all the questions, but my neurologist just wrote me off to pain mgmt. So I have been search for another one but as everyone knows it's hard to find a doc who really knows about dystonia. Even though they advertise they work with this disease but they don't really know anything. I have been through hundred's of doc because of this.
Cris - would be gratiful for any help with any or all of the above problems
Everything I have read says that it stablizes after about 5 yrs. Mine doesn't seem to be, it seems to be getting worse.
1st - And have already had one remission, my first question is can you have more than 1 remission. Through my research only 1 has ever been mentioned. I keep praying to go into remission again but it hasn't happened yet.
2nd question - new symtons - my eyes close on their own and I have to force them open. Again through research I have read that it could lead to blindness is this true?
3rd question - has anyone developed tumors from their dystonia? I had to have surgery this past summer because they found a 6cm (golf ball size) tumor at first oncologist that it was sarcoma cancer but after 3 tests from pathology they decided it was a side effect of dystonia. And I have never read anywhere about anyone getting tumors. Now, I have to see my oncologist every 6 months for a undetermined time and if I don't get anymore than it will move to yearly.
4th question - another new symton - fatigue and pain leaves me in bed most of my day, if luckily I will get about an 1hr a night. But, I have noticed lately that I can be on the softest pillows but at the base of my skull it feels like I'm laying on a metal bar. Not matter how often I re-arrange the pillows it doesn't go away. And when I wear my soft collar it doesn't help it actually makes it worse.
Sorry about all the questions, but my neurologist just wrote me off to pain mgmt. So I have been search for another one but as everyone knows it's hard to find a doc who really knows about dystonia. Even though they advertise they work with this disease but they don't really know anything. I have been through hundred's of doc because of this.
Cris - would be gratiful for any help with any or all of the above problems
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Comment by chyvonneb on January 8, 2010 at 7:06am -
I'm sorry to hear about the increasing problems. I don't have the answers, but I know someone will read this and give advice. I have CD and was told it probably won't increase. But, this disorder is so unpredictable with so many underlying causes. I hope you do go into remission and quickly. But, in the meantime, it can't hurt to look into diet and alternative therapies--being very cautious and researching as much as possible into all areas of health. If and when possible, light exercise might be an option. It's important to get the toxins out. I haven't gone into remission or anything. But, I am all about looking into ways to try and make the body as healthy as possible. You never know what could happen. Also, I believe in the power of prayer.
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