Comments for The Patient Experience http://www.patient-experience.com from The Patients Voice Wed, 22 Feb 2012 17:26:00 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Does anyone else in your family have multiple sclerosis? by laura polk http://www.patient-experience.com/index.php/does-anyone-else-in-your-family-have-multiple-sclerosis/comment-page-3/#comment-1578 laura polk Wed, 22 Feb 2012 17:26:00 +0000 http://www.patient-experience.com/?page_id=2907#comment-1578 My Sister was diagnosed at 18 years old, back in early 80s and was was just diagnosed over a year ago, at 45 years old. My Sister was diagnosed at 18 years old, back in early 80s and was was just diagnosed over a year ago, at 45 years old.

]]> Comment on A lupus blog – getting diagnosed with a “great imitator” condition. by Donjr36 http://www.patient-experience.com/index.php/a-lupus-blog-getting-diagnosed-with-a-great-imitatorcondition/comment-page-1/#comment-1576 Donjr36 Wed, 22 Feb 2012 07:25:00 +0000 http://www.patient-experience.com/?page_id=3653#comment-1576 Hi my name is Don and I was diagnosed with SLE 3 years ago. My initial diagnosis was correct, but there were overlapping symtoms from Sjogrens and polymiosotis that confused my first Dr. I went to another more experienced Rheumatologist and with additional test he was able to pinpoint what was going on in my body. I take Plaquinil, Methotrexate, and Prednisone along with other medications for blood pressure. The polymiositis is currently affecting the most right now It flared up about 6 months ago and the prednisone is trying keep in check. I cant really remember all the test that were taken, bone density, sonogram on my liver, mris on my hips. My advice to someone with SLE is first find a good Dr. read about lupus from well known and established sources, get a good support system friends, family. Remember your in this alone, and if you are inclined to pray everyday it does help. Later the Lupus dude ;)) Hi my name is Don and I was diagnosed with SLE 3 years ago. My initial diagnosis was correct, but there were overlapping symtoms from Sjogrens and polymiosotis that confused my first Dr. I went to another more experienced Rheumatologist and with additional test he was able to pinpoint what was going on in my body. I take Plaquinil, Methotrexate, and Prednisone along with other medications for blood pressure. The polymiositis is currently affecting the most right now It flared up about 6 months ago and the prednisone is trying keep in check. I cant really remember all the test that were taken, bone density, sonogram on my liver, mris on my hips. My advice to someone with SLE is first find a good Dr. read about lupus from well known and established sources, get a good support system friends, family. Remember your in this alone, and if you are inclined to pray everyday it does help. Later the Lupus dude ;) )

]]> Comment on What are the early sign and symptoms of Celiac or Coeliac Disease? by GUEST http://www.patient-experience.com/index.php/what-are-the-early-sign-and-symptoms-of-celiac-or-coeliac-disease/comment-page-1/#comment-1575 GUEST Wed, 22 Feb 2012 05:37:00 +0000 http://www.patient-experience.com/?page_id=3757#comment-1575 Celiac disease is not simply "gluten intolerance."  It is far more complicated and serious than that.  Many people are gluten intolerant who do not have celiac disease.   And there is no "mild celiac" -- there may be mild symptoms, versus more sever symptoms, but there are no "grades" of the disease.  You either have it, or you don't.   All of this information is widely available ont he internet.  If you're going to post about a DISEASE, you should at least do your homework first. Celiac disease is not simply “gluten intolerance.”  It is far more complicated and serious than that.  Many people are gluten intolerant who do not have celiac disease.   And there is no “mild celiac” — there may be mild symptoms, versus more sever symptoms, but there are no “grades” of the disease.  You either have it, or you don’t.   All of this information is widely available ont he internet.  If you’re going to post about a DISEASE, you should at least do your homework first.

]]> Comment on Health, Discrimination and Disability by Ardentluma http://www.patient-experience.com/index.php/health-discrimination-and-disability/comment-page-1/#comment-1573 Ardentluma Tue, 21 Feb 2012 18:03:00 +0000 http://www.patient-experience.com/?page_id=2341#comment-1573 My name is Allison. I have Endometriosis. Endometriosis is a chronic autoimmune disease that affects women. It's very painful and I am sick quite often. This year it has gotten worse for me and I have had to go to appointments and call off of work more times than I normally do. I get threatened with my job because of this. My boss tells me to 'suck it up and deal with it'. Most people judge me and have flat out told me that I am faking it or that it can't be that bad when all I want to do is just die - I'm so tired of suffering. So far? I have not fought. Now I just don't care to. I'd rather stay home and away from people. I'm afraid I'm going to lose my job. My name is Allison. I have Endometriosis. Endometriosis is a chronic autoimmune disease that affects women. It’s very painful and I am sick quite often. This year it has gotten worse for me and I have had to go to appointments and call off of work more times than I normally do. I get threatened with my job because of this. My boss tells me to ‘suck it up and deal with it’. Most people judge me and have flat out told me that I am faking it or that it can’t be that bad when all I want to do is just die – I’m so tired of suffering. So far? I have not fought. Now I just don’t care to. I’d rather stay home and away from people. I’m afraid I’m going to lose my job.

]]> Comment on A pain blog – the patient experience of treatments by Rchempel http://www.patient-experience.com/index.php/a-pain-blog-the-patient-experience-of-treatments/comment-page-1/#comment-1572 Rchempel Tue, 21 Feb 2012 17:06:00 +0000 http://www.patient-experience.com/?page_id=3642#comment-1572 Based in London.I am 64 & had my first experience when I broke my leg at 16.I then fell downstairs at work carrying a desk in 1971/2 & found I had slipped a disc in my back.I broke my other leg in 1973. I then started to get problems with my knees in 1974/5& was told I had Osteoarthritis. It spread to other parts of my body due to the nature of my job(driving as a Sales Rep). I then trapped 4 nerves in my neck in 2004 & after the scan to see how bad it was they told me I had Cervical Spondylosis in my neck & shoulder. I also have Fibromyalgia in my calf muscles.I had a double bypass in 2008 which left me with pain from the scar tissue inside where they did the repair. The pain varies according to the weather(gets worst on damp rainy days & in the cold of winter) & due to me taking Simvastatins my  muscles are getting weaker which makes my joints hurt more.I started taking Aspirin at first to ease the pain in my back then moved on to Paracetamol.When that stopped working I went on to Tramadol.When I was told I had Osteoarthritis I was put on Diclofenac which I took several different brands for a number of years.I also tried Glucosamine & Chondroitin & MSM & Rose-hips, all of these only eased the pain for a short time.After 37 years of taking various anti-imflamities I was taken off tablets as they discovered I had a Pectic Ulcer so now I am on a 7 day patch with very little option for any increment in strength. The next step is possible injections of very heavy drugs! I do do exercise everyday just to loosen up but the benifit only lasts so long.I try keeping busy & keep my mind off of it but when you start dropping things it gets worrying! What have I learned about pain is to some degree there is only so much doctors can help you with.You have to try & take a positive attitude to it & find a way to try & ease it.Talk to people about it but don't moan!Someone some where might have something to deal with it that you have not tried! Based in London.I am 64 & had my first experience when I broke my leg at 16.I then fell downstairs at work carrying a desk in 1971/2 & found I had slipped a disc in my back.I broke my other leg in 1973. I then started to get problems with my knees in 1974/5& was told I had Osteoarthritis. It spread to other parts of my body due to the nature of my job(driving as a Sales Rep). I then trapped 4 nerves in my neck in 2004 & after the scan to see how bad it was they told me I had Cervical Spondylosis in my neck & shoulder. I also have Fibromyalgia in my calf muscles.I had a double bypass in 2008 which left me with pain from the scar tissue inside where they did the repair. The pain varies according to the weather(gets worst on damp rainy days & in the cold of winter) & due to me taking Simvastatins my  muscles are getting weaker which makes my joints hurt more.I started taking Aspirin at first to ease the pain in my back then moved on to Paracetamol.When that stopped working I went on to Tramadol.When I was told I had Osteoarthritis I was put on Diclofenac which I took several different brands for a number of years.I also tried Glucosamine & Chondroitin & MSM & Rose-hips, all of these only eased the pain for a short time.After 37 years of taking various anti-imflamities I was taken off tablets as they discovered I had a Pectic Ulcer so now I am on a 7 day patch with very little option for any increment in strength. The next step is possible injections of very heavy drugs! I do do exercise everyday just to loosen up but the benifit only lasts so long.I try keeping busy & keep my mind off of it but when you start dropping things it gets worrying!
What have I learned about pain is to some degree there is only so much doctors can help you with.You have to try & take a positive attitude to it & find a way to try & ease it.Talk to people about it but don’t moan!Someone some where might have something to deal with it that you have not tried!

]]> Comment on What are the most common symptoms of Type 2 diabetes? by Joni http://www.patient-experience.com/index.php/what-are-the-most-common-symptoms-of-type-2-diabetes/comment-page-1/#comment-1571 Joni Tue, 21 Feb 2012 16:30:00 +0000 http://www.patient-experience.com/?page_id=3718#comment-1571 I agree with your comment as a whole. However, in my case, because diabetes runs rampant in my father's side of the family, I kept a close check on my glucose levels and saw my doctor immediately if I thought there was a problem. The weird thing is... for years and years, my levels were "normal" and nothing to worry about. I was still having symptoms and my doctor couldn't figure out why. Fasting levels were between 90 and 110 all the time and my doc assured me those were nothing to worry about. My A1C was at 5.00 or below. Then all of a sudden two months ago, my fasting level was 240 and the A1C was 6.7. Not too terribly high (A1C) but enough to be diagnostic. Neither my doc nor I can understand this. But the damage to my body had been done. I tried to make sure I kept a good lookout for the disease, but it snuck up on me and hit me over the head. I agree with your comment as a whole. However, in my case, because diabetes runs rampant in my father’s side of the family, I kept a close check on my glucose levels and saw my doctor immediately if I thought there was a problem. The weird thing is… for years and years, my levels were “normal” and nothing to worry about. I was still having symptoms and my doctor couldn’t figure out why. Fasting levels were between 90 and 110 all the time and my doc assured me those were nothing to worry about. My A1C was at 5.00 or below. Then all of a sudden two months ago, my fasting level was 240 and the A1C was 6.7. Not too terribly high (A1C) but enough to be diagnostic. Neither my doc nor I can understand this. But the damage to my body had been done. I tried to make sure I kept a good lookout for the disease, but it snuck up on me and hit me over the head.

]]> Comment on What are the most common symptoms of Type 2 diabetes? by Joni http://www.patient-experience.com/index.php/what-are-the-most-common-symptoms-of-type-2-diabetes/comment-page-1/#comment-1570 Joni Tue, 21 Feb 2012 16:21:00 +0000 http://www.patient-experience.com/?page_id=3718#comment-1570 I had every symptom but C and F. I wish I had been aware of what the rest of it all meant. Maybe I could have saved myself from Diabetic Neuropathy in my hands and feet. It's an evil, hellish disease. I don't sleep much because I hurt more than I could ever possibly explain. Only someone who has experienced DN can understand how I feel. I was diagnosed two months ago and am on Metformin. I am also on Cymbalta and Gabapentin for the pain. Some days the meds help... some days not. I had every symptom but C and F. I wish I had been aware of what the rest of it all meant. Maybe I could have saved myself from Diabetic Neuropathy in my hands and feet. It’s an evil, hellish disease. I don’t sleep much because I hurt more than I could ever possibly explain. Only someone who has experienced DN can understand how I feel. I was diagnosed two months ago and am on Metformin. I am also on Cymbalta and Gabapentin for the pain. Some days the meds help… some days not.

]]> Comment on Hepatitis C – a blog about the signs and symptoms of Hep C by Kerri http://www.patient-experience.com/index.php/hepatitis-c-a-blog-about-the-signs-and-symptoms-of-hep-c/comment-page-1/#comment-1560 Kerri Mon, 20 Feb 2012 19:11:00 +0000 http://www.patient-experience.com/?page_id=3739#comment-1560 a) diagnosed in March 2007, I was tested after it was discovererd my Mum was infected - both  genotype 1 b) Neither of us know, not high risk ie no drug use, tatoos or blood transfusions :( c) I have no symptoms d) I was on interferon/ribavirin for 6mnths but taken off as no responce :( a) diagnosed in March 2007, I was tested after it was discovererd my Mum was infected – both  genotype 1
b) Neither of us know, not high risk ie no drug use, tatoos or blood transfusions :(
c) I have no symptoms
d) I was on interferon/ribavirin for 6mnths but taken off as no responce :(

]]> Comment on How effective have you found nutritional and protein supplements for health and physical fitness? Check out our new video blog! by heather vowles http://www.patient-experience.com/index.php/how-effective-have-you-found-nutritional-and-protein-supplements-for-health-and-physical-fitness-check-out-our-new-video-blog/comment-page-1/#comment-1559 heather vowles Mon, 20 Feb 2012 18:03:00 +0000 http://www.patient-experience.com/?page_id=3748#comment-1559 Heather Fay-Vowles I am 34 years old and have RA/psoriatic arthritis. I have a busy life with 5 kids and was slowly getting depressed....especially with no energy! My local fitness trainer introduced me too a nutritional shake (the best out there right now!) ...No sugar, fibre, calcium, protein and 23 vitamins and minerals and more! I've been having 2 a day for 3 months and I have my life back! IT WORKS! Plus because weightloss is 80% nutrition...I've lost 15 pounds! I have never felt so good...I've also cut down my pain meds! Eating right is number one but sometimes hard to get everything you need in your body on a daily basis. This nutrition shake is easy, yummy and affordable!!! :) Hope that helps....check it out www.heathervowles.bodybyvi.com Also please post if you are already are using these shakes...it's so exciting to hear about everyone's happiness!!!!See more Welcome heathervowles.bodybyvi.com Heather Fay-Vowles I am 34 years old and have RA/psoriatic arthritis. I have a busy life with 5 kids and was slowly getting depressed….especially with no energy! My local fitness trainer introduced me too a nutritional shake (the best out there right now!) …No sugar, fibre, calcium, protein and 23 vitamins and minerals and more! I’ve been having 2 a day for 3 months and I have my life back! IT WORKS! Plus because weightloss is 80% nutrition…I’ve lost 15 pounds! I have never felt so good…I’ve also cut down my pain meds! Eating right is number one but sometimes hard to get everything you need in your body on a daily basis. This nutrition shake is easy, yummy and affordable!!! :) Hope that helps….check it out http://www.heathervowles.bodybyvi.com Also please post if you are already are using these shakes…it’s so exciting to hear about everyone’s happiness!!!!See more Welcome heathervowles.bodybyvi.com

]]> Comment on A pain blog – the patient experience of treatments by Keridak Silk http://www.patient-experience.com/index.php/a-pain-blog-the-patient-experience-of-treatments/comment-page-1/#comment-1549 Keridak Silk Sun, 19 Feb 2012 05:38:00 +0000 http://www.patient-experience.com/?page_id=3642#comment-1549 I am responding for my boyfriend he has chronic RA in the lower back which developed from his back surgery a few years ago. He is 61 and very fit but had been in intense pain often.  He spent much of the time treating it with ibuprofen. He stretched alot and found that often physical activity left him in such pain he had to lay down and not move.  About three months ago we talked with a friend who was jumping around like a kid. They were thrilled that a life time of pain was pretty much eliminated. So we bit and tried the product : Nopalea from TRIVITA.  Amazing it has worked wonders!!  We went to http://Iampainless.com to purchase but it also has my friend's story and how much his family has benefited.  We are thrilled that a little cactus has such a strong anti inflammatory that Bob can now play 2 hrs of pickle ball (yes that's what they call it! Crazy people in Wisconsin) He still has the ability to have a life and exercise to his hearts content. I am thrilled and look forward to many happy years! I am responding for my boyfriend he has chronic RA in the lower back which developed from his back surgery a few years ago. He is 61 and very fit but had been in intense pain often. 

He spent much of the time treating it with ibuprofen. He stretched alot and found that often physical activity left him in such pain he had to lay down and not move.  About three months ago we talked with a friend who was jumping around like a kid. They were thrilled that a life time of pain was pretty much eliminated. So we bit and tried the product : Nopalea from TRIVITA.Â
Amazing it has worked wonders!!  We went to http://Iampainless.com to purchase but it also has my friend’s story and how much his family has benefited. 

We are thrilled that a little cactus has such a strong anti inflammatory that Bob can now play 2 hrs of pickle ball (yes that’s what they call it! Crazy people in Wisconsin) He still has the ability to have a life and exercise to his hearts content. I am thrilled and look forward to many happy years!

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