Guest guest Posted November 15, 2001 Report Share Posted November 15, 2001 Hi I'm new to the group but not to Arnold. I was dx and had my first surgery in 1974. I was 24. I had the same surgery in 86 and 95. I'm weak but have been pain free. I hope I can share with you. Can someone recommend a neurologist in the Chicago area? Dr. Menezes at Iowa City is too far away. He did my surgeries. I hope to talk with many of you. peace, Peg Downers Grove, IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2001 Report Share Posted November 15, 2001 DEar Peg, What about Dr. Frim. He is in Chicago!! I am going from Ohio all the way to Iowa to see Dr. Menezes for a surgical consult on December 14. I haven't had any surgery yet - but three opinions say I need it soon! I am so glad I got in with Dr. M. Did you have basilar invagination too? Did you need a transoral surgery?? I think I may need to. What was your experience with Dr. M??? Wait till you talk to Alba - she just got her halo off! She loves Dr. M. She practially got me in to see him!! Write back if you get a minute! Welcome to the group!! Glad to have you! Hug and prayers, Karyn Karyn, ACM I, no syrinx, basilar invagination, surgery soon - no date yet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Sandy, Have you had any blood work done? I've had so much blood work done, and it ends up on top of the RSD I have Lupus. This can also cause joint pain, swelling, fatigue, weight loss....several symptoms that are similar to RSD. It's probably a good idea to have blood work done if you haven't already. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Sandy, Have you had any blood work done? I've had so much blood work done, and it ends up on top of the RSD I have Lupus. This can also cause joint pain, swelling, fatigue, weight loss....several symptoms that are similar to RSD. It's probably a good idea to have blood work done if you haven't already. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi Sandy Neurontin will do that to a person. Ask your doctor for Gabitril, Topamax or some other kind of Anti-Seizure medication. Topamax I found out didn't make me lose my concentration or memory like the Neurontin did. Just be VERY CAREFUL when weaning off the Neurontin. It is a very dangerous and possibly deadly drug to come off of. And, actually, You don't have to have any burning pain to have RSD. The symptoms you DO have are also signs of RSD. Everyone is different, so everyone will have different kinds of pain and symptoms. Actually, there are 3 different diseases with the same symptoms almost: RSD, Fibromyalgia and Neuropathy. Any one of those could be the culprit. Ask your Neurologist to test you for Fibromyalgia or Neuropathy first. Tonia -------Original Message------- Hi All,I am new to the group. I live about 20 miles north of Pittsburgh Pennsylvania. On Friday I was diagnosed with RSD. About 8 years ago I had a deep vein thrombosis (Blood clot) under my right arm. 2 years later I developed another one. Ever since the 1st blodd clot I have had constant achiness and swelling. Sometimes the achiness is so bad that I can't stand to be touched. It makes me very tired all the time. I feel useless so much of the time. After working all day, I go home and crash in my favorite easy chair and I am out for the day. I have no quality of life. I would not call my pain a burning pain, but it is a deep aching pain. I don't like to be touched on my arm. I am scheduled for QSART (autonomic) testing on Monday. My neurlogist put me on neurontin, but I am having coordination and memory problems since I started taking it. I called the DR. today, waiting to see what his recomendation is about the med. Sorry for the rambling, but just wondering if there is anyone else out there with a similar situation and looking for words of encouragement. Since my right arm is my dominant arm, I'm not sure I am going to be able to continue to work. I do a lot of typing and computer work as part of my job all day so that is probably one reason I am so wiped out by the end of the day.Anyway, HI to all, and I look forward to participating in the group.Thanks,Sandy T. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi Sandy Neurontin will do that to a person. Ask your doctor for Gabitril, Topamax or some other kind of Anti-Seizure medication. Topamax I found out didn't make me lose my concentration or memory like the Neurontin did. Just be VERY CAREFUL when weaning off the Neurontin. It is a very dangerous and possibly deadly drug to come off of. And, actually, You don't have to have any burning pain to have RSD. The symptoms you DO have are also signs of RSD. Everyone is different, so everyone will have different kinds of pain and symptoms. Actually, there are 3 different diseases with the same symptoms almost: RSD, Fibromyalgia and Neuropathy. Any one of those could be the culprit. Ask your Neurologist to test you for Fibromyalgia or Neuropathy first. Tonia -------Original Message------- Hi All,I am new to the group. I live about 20 miles north of Pittsburgh Pennsylvania. On Friday I was diagnosed with RSD. About 8 years ago I had a deep vein thrombosis (Blood clot) under my right arm. 2 years later I developed another one. Ever since the 1st blodd clot I have had constant achiness and swelling. Sometimes the achiness is so bad that I can't stand to be touched. It makes me very tired all the time. I feel useless so much of the time. After working all day, I go home and crash in my favorite easy chair and I am out for the day. I have no quality of life. I would not call my pain a burning pain, but it is a deep aching pain. I don't like to be touched on my arm. I am scheduled for QSART (autonomic) testing on Monday. My neurlogist put me on neurontin, but I am having coordination and memory problems since I started taking it. I called the DR. today, waiting to see what his recomendation is about the med. Sorry for the rambling, but just wondering if there is anyone else out there with a similar situation and looking for words of encouragement. Since my right arm is my dominant arm, I'm not sure I am going to be able to continue to work. I do a lot of typing and computer work as part of my job all day so that is probably one reason I am so wiped out by the end of the day.Anyway, HI to all, and I look forward to participating in the group.Thanks,Sandy T. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Welcome to the group, Sandy. Looking forward to getting to know you better - Barbara"Sandy T." wrote: Hi All,I am new to the group. I live about 20 miles north of Pittsburgh Pennsylvania. On Friday I was diagnosed with RSD. About 8 years ago I had a deep vein thrombosis (Blood clot) under my right arm. 2 years later I developed another one. Ever since the 1st blodd clot I have had constant achiness and swelling. Sometimes the achiness is so bad that I can't stand to be touched. It makes me very tired all the time. I feel useless so much of the time. After working all day, I go home and crash in my favorite easy chair and I am out for the day. I have no quality of life. I would not call my pain a burning pain, but it is a deep aching pain. I don't like to be touched on my arm. I am scheduled for QSART (autonomic) testing on Monday. My neurlogist put me on neurontin, but I am having coordination and memory problems since I started taking it. I called the DR. today, waiting to see what his recomendation is about the med. Sorry for the rambling, but just wondering if there is anyone else out there with a similar situation and looking for words of encouragement. Since my right arm is my dominant arm, I'm not sure I am going to be able to continue to work. I do a lot of typing and computer work as part of my job all day so that is probably one reason I am so wiped out by the end of the day.Anyway, HI to all, and I look forward to participating in the group.Thanks,Sandy T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Welcome to the group, Sandy. Looking forward to getting to know you better - Barbara"Sandy T." wrote: Hi All,I am new to the group. I live about 20 miles north of Pittsburgh Pennsylvania. On Friday I was diagnosed with RSD. About 8 years ago I had a deep vein thrombosis (Blood clot) under my right arm. 2 years later I developed another one. Ever since the 1st blodd clot I have had constant achiness and swelling. Sometimes the achiness is so bad that I can't stand to be touched. It makes me very tired all the time. I feel useless so much of the time. After working all day, I go home and crash in my favorite easy chair and I am out for the day. I have no quality of life. I would not call my pain a burning pain, but it is a deep aching pain. I don't like to be touched on my arm. I am scheduled for QSART (autonomic) testing on Monday. My neurlogist put me on neurontin, but I am having coordination and memory problems since I started taking it. I called the DR. today, waiting to see what his recomendation is about the med. Sorry for the rambling, but just wondering if there is anyone else out there with a similar situation and looking for words of encouragement. Since my right arm is my dominant arm, I'm not sure I am going to be able to continue to work. I do a lot of typing and computer work as part of my job all day so that is probably one reason I am so wiped out by the end of the day.Anyway, HI to all, and I look forward to participating in the group.Thanks,Sandy T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Actually, it was 2 months shy of being 3 years of having RSD when I was dx'd with Fibro. I was doomed anyways......my birth mother was dx'd with Fibro 7 months before I was....and its one of those genetic things.... Tonia -------Original Message------- That is true Tonia, but I think alot of us have both Fibro and RSD. I know they can both exist seperately but it is strange how many of us have Fibro too. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Actually, it was 2 months shy of being 3 years of having RSD when I was dx'd with Fibro. I was doomed anyways......my birth mother was dx'd with Fibro 7 months before I was....and its one of those genetic things.... Tonia -------Original Message------- That is true Tonia, but I think alot of us have both Fibro and RSD. I know they can both exist seperately but it is strange how many of us have Fibro too. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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