Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 In a message dated 12/8/2003 4:22:41 AM Eastern Standard Time, PennyK5125@... writes: .. The first thing this doctor said was, you've been misdiagnosed and I'm sure you have psoriatic arthritis. I read every single thing I could find on the Internet and off about arthritis before I saw him and never heard of this form of arthritis. I Hi Penny, My rheumy said that fibro and PA run hand in hand alot. I have been treated for the PA with Enbrel and it did not help. He said he thinks I have a combination of the two. He wants me to take zoloft now for the fibro and I have not started it as of yet. I am on so many other meds and trying to lose weigh and have been told by many that Zoloft cause weight gain. I need to discuss something else with him. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Penny, obviously, I can't speak to the competence of this doctor, however, he may be one of the few doctors in your area who recognizes psoriatic arthritis when he sees it - hence the large number of diagnoses. My rheumatologist knows the signs of PA and makes the diagnosis when appropriate. Does that mean that he has more patients with PA than another doctor? Not necessarily - he just may be a superior diagnostician. There are a number of people on this board who were not diagnosed with PA originally because many rheums are not skilled enough to recognize this disease when they see it. Do you have psoriasis? Do you have nail pitting? What are some of your symptoms? These are the sorts of things that can pretty much help a doctor hone in on PA. Good luck, Kathy My question is this, since it was my understanding that this is a fairly rare form of arthritis, what are the chances that the same doctor diagnoses it so often? Thanks for your help! Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Mimi, So sorry to hear you aren't doing well. Are you taking any vitamins or detox things? I will pray for you. Do not lose hope, I know its hard at times. There are some days I get discouraged too, but I just try to look at how so many got better like Patty, , , etc. _Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Pretty soon you will be helping others, Mimi! Hang in there as you will get better. May very well be that this is the worst of it, and not uncommmon at explant. If it can't get worse, then it can only get better. Please do not give up as there is a reason you have made it this far. Sawyer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 My dearest Mimi, Please don't apologize to us for anything...we are here for you, and that is the purpose for this group. I want you to come to us when you are at a loss and losing hope, because we can give you hope and encourage you through this time. I know it is difficult, so hard to face each day knowing it isn't much better than the last, but please hang on to every shred of faith you have Mimi. This is probably the worst of it right now, and in time your symptoms are going to dissipate. One of the features of autoimmune disease is this concept of "flares" and good days and bad days. It is very up and down, and right now you are in one of those flares. There is alot of inflammation going on, and flares vary in their duration, but things can be done to help that inflammation. There are natural things, but sometimes when the flares are life threatening or very severe, the only relief you can get may come from taking steroid drugs like prednisone. I hate to even say to take them, because I am for the most part against them, but the truth is that there are times when they will bring that needed relief Mimi, and you may want to try taking them to help you get through the worst of flares. Have you discussed this with any of your doctors? I apologize for not remembering if you are seeing a rheumatologist or naturopathic doctor....but please let us know. I myself have never taken prednisone, but I know women that have, and I do think that in certain cases small doses can get you through the worst of times. I will pray for you Mimi, and always know that we care for you and want to help you. Make sure you are helping your body eliminate all those toxins that are trying to get out, and in my view it is the liver that needs the most help..try taking some beneficial liver herbs, or eating the kinds of vegetables that the liver likes...such as beets, carrots, and garlic and also take the essential fatty acids that fight inflammation, such as evening primrose oil, borage oil or black currant oil. I am praying for you Mimi, please know that you are being lifted up to the Father in Heaven. Love, Patty ----- Original Message ----- From: Mimi Merchant Sent: Monday, December 08, 2003 12:21 PM Subject: (unknown) Hello dear friends, I am sorry for not being able to write as I am very ill, I have swelling all over my face when I get up my eyes are just a slit and as the day goes by it improves a bit but not completely. My shoulder pain is horrible and so is my knee pain, I have terrible stiffness and pain in my both hands cannot pick up anything, I am awake nearly whole night due to pain, can only sleep with sleeping tablets. they have diagnosed me with Multiple conective tissue dissorder and lupas, I have been explanted on 10 Oct by Dr Feng. I am fed up and at times feel cannot go on for a day more only my faith in God stops me from commiting suicide. May I request a prayers from all of you for me. thank you and God bless. Any help from all of you my sisters will be appreciated. Sorry I am no help to anyone but always asking all of you to help. God bless you all. love..mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Dear Mimi, I read your email and felt so terrible for you, it also remined me of how desperate I felt at times.I promise you that this will pass and you will get better, sometimes its very slow but you will I promise start to see small improvements.After a while you will forget about the really bad things that are happening to you at this point, they will seem a distant memory.I too felt that I could not carry on, but as I have six children that kept me going I only had to look at them to see they needed me more than anything, well I am so glad I did as I am back to work and enjoying my life again (SOMETHING I NEVER THOUGHT WOULD HAPPEN ) Your explant was only a very short time ago, for me it took a while before I felt more normal, but you will get there I promise. I was very ill from silicone implants I could not do anything for myself or even be left alone, I had no feeling in my hands, my legs would go numb and I could not walk, I was so ill I thought I was going to die, but I am still here and doing everything that I should be. I really hope that you feel better soon, I know you will. I will pray for you tonight all the way from England. Keep intouch to tell me your progress . Sue.xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Dave- I tried to set up the scanner when I first got it but screwed up by not following instructions. Hey, I'm a guy! Who needs instructions? LOL! All I did was to have the software that I'd misinstalled slow down the computer so I removed it. The whole episode made me shy about trying to reinstall the scanner. I finally bit the bullet and now have it up and running. The scanner was free along with a printer from EarthLink. Of course the printer goes through ink cartridges and at ~$40.00 a pop we've spent a lot of money over the past 15 months. L, B & SFC Diane- > > I just set up my scanner last weekend [had it for 15-months, which > shows what a procrasinator I am, LOL!] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Mimi, I hope you take what Sue says to heart . . . I've been watching Sue get better for quite some time now. . . She has really come a long way! She ran for the position of councilor before she was sure she could handle the job . . . but she won the election, and is doing great! You can do it too. Just hang in there, do what you know you have to do (even when you don't feel like it), and one day, you'll be here encouraging someone else. It's terrible that it can be so bad and take so long to get better . . . but it's well worth the effort. Hugs and prayers, Rogenegibbense@... wrote: Dear Mimi, I read your email and felt so terrible for you, it also remined me of how desperate I felt at times.I promise you that this will pass and you will get better, sometimes its very slow but you will I promise start to see small improvements.After a while you will forget about the really bad things that are happening to you at this point, they will seem a distant memory.I too felt that I could not carry on, but as I have six children that kept me going I only had to look at them to see they needed me more than anything, well I am so glad I did as I am back to work and enjoying my life again (SOMETHING I NEVER THOUGHT WOULD HAPPEN ) Your explant was only a very short time ago, for me it took a while before I felt more normal, but you will get there I promise. I was very ill from silicone implants I could not do anything for myself or even be left alone, I had no feeling in my hands, my legs would go numb and I could not walk, I was so ill I thought I was going to die, but I am still here and doing everything that I should be. I really hope that you feel better soon, I know you will. I will pray for you tonight all the way from England. Keep intouch to tell me your progress . Sue.xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Mimi, My mother has an unknown autoimmune disease due to her knee replacements that she got a couple years ago. She has fibromyalgia symptoms, but not officially diagnosed with anything yet (they thought rheumatoid arthritis at one point, but ruled that out.) She got on the plaquenil last year and says it has helped her alot. I know she has to get her eyes checked out periodically while on this drug. Plaquenil has been given to other implanted women to relieve some symptoms...let us know how you do on it, and if you feel some improvements, but keep in mind the goal is to be able to get off all drugs and detox at some point from them all. I hope you are feeling better! Patty ----- Original Message ----- From: Mimi Merchant Sent: Tuesday, December 09, 2003 6:23 PM Subject: Re: (unknown) all my dear friends and sisters,Thank you all for your support I am so thankfull to God that He directed me to this group of kind, loving caring friends, May God bless you all and heal us all soon. Today I was in hospital whole day as I had my rummys appointement, then blood work, then xray, then eye specialist as I have auto immune problem in my eyes too, hence the delay in replying the rummy gave me cortisone shot in my knee to help with the pain, hope it works. I am sorry and apologise for not being able to write and thank each one indivdually(as I would very much want to do)because of my extremely hurting right shoulder, I will be getting cortisone in my shoulder next week. I was wondering if any one was given plaquil(not sure of spelling) it is antimalarial drug, and did it help. Pam was asking if I had been diagnosed for auto immune before explant, yes I was my symptoms had sort of become quite better after explant and say a fter six weeks of explant they sort of stirred up, but I am really glad I was explanted as according to all my saline group sisters this is normal and I might be on my way to recovery so Pam you are doing a wise and right thing, being expalnted, and I wish you all the luck. Pyn you wanted to know my original size which was 38b but very droppy as I have three kids and did not need an implant just a lift but my ps sold me to implant. with implant I was 38 d, i had lift with explant with dr feng who is excellent and am very happy with her work now my size is 38 b. are you having a lift too? Love and blessings to all of you and I pray to God may you all heal fast and I hope am capable of being of help to all of you as you all have been to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 I know just where you're coming from there. I'm also a computer programmer, so I feel like I should know enough to do these things. Even though as a programmer, I only work with software, not hardware. I have crashed my PC many times, screwing around with things I thought I knew what I was doing. But, then again I've learned quite a bit that way too. My wife has had to listen to many hours of me cursing and threatening to pitch the thing out the door. -dz-Wharf_Kitty <wharf_kitty@...> wrote: Dave-I tried to set up the scanner when I first got it but screwed up by not following instructions. Hey, I'm a guy! Who needs instructions? LOL! All I did was to have the software that I'd misinstalled slow down the computer so I removed it. The whole episode made me shy about trying to reinstall the scanner. I finally bit the bullet and now have it up and running. The scanner was free along with a printer from EarthLink. Of course the printer goes through ink cartridges and at ~$40.00 a pop we've spent a lot of money over the past 15 months.L, B & SFCDiane-> > I just set up my scanner last weekend [had it for 15-months, which > shows what a procrasinator I am, LOL!] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Heard anymore about Kathie? Later, Mike Briggs Photo Gallery: http://www.pbase.com/photogrif/ " Fish Gotta Swim, I Gotta Dive " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 Kathy, Thanks so much for your post. Awesome support! You are doing your work and educating yourself as well as us...keep posting on your progress. Love, Patty ----- Original Message ----- From: mikat828 Sent: Tuesday, December 02, 2003 8:23 PM Subject: (unknown) Dear mimiHi. I am several days behind in checking my emails. I am sorry to hear you are not feeling well and are feeling so down. I have been there many times. There are many ups and downs with these conditions--and steps forward followed by steps backward. I too was diagnosed with mixed connective tissue disease. But I have done really well and am continuing to improve. Please don't get discouraged---I believe there is much you can do to try and improve your health no matter what your diagnosis. Actually very little is known about autoimmune illness and that kind of leaves the field wide open as far as finding your own path to wellness. Many people have. I always recommend that people check out websites for antibiotic therapy. I have been on antibiotic therapy for 2 years. I TOTALLY BELIEVE IN IT'S ABILITY TO HELP. I have 2 mycoplasmas and within weeks of taking the antibiotic therapy my heart improved dramatically as well as many other symptoms. I follow dr. McPherson Brown's protocol and belong to 2 websites dealing exclusively with autoimmune illness and antibiotic therapy. I recommendd that you check out www.roadback.org and www.rheumatic.org. yOU will find people on both sites who have mixed connective tissue disease who have benefitted from ap. I went to a dr. in iowa who prescribed it for me. After much consideration, I have to say that I am also very impressed with rife machine technology. I also am impressed with lauricidin and oil of oregano and olive leaf extract. These supplements are antiviral, antiparasitic, antifungal and antibacterial--including anti mycoplasmal. Did you ever get the book Patient Heal thyself? If not, I can still send a copy as I have several. Let me know. Please know that there are many many things you can try and it will probably take time...and many ups and downs. hang in there and God blesskathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 Barbara, Thanks! I added this link to our website. Great for info. Patty ----- Original Message ----- From: barbsul2002 Sent: Thursday, December 11, 2003 11:16 AM Subject: (unknown) I thought I would post this website that I found helpful in explaining different lab tests and conditions.http://www.labtestsonline.org/Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 If you just want more T4 drugs, you can order over the internet w/out Rx. But I think your problem IS the T4 drug $ynthroid. You need more than T4 to feel well. http://www.geocities.com/thyroide http://www.armourthyroid.com Gracia > Hey this is good to know...not that you too struggle with this > ridiculous condition but that there are other people who understand. > I'm new to this group but I just thought I'd share this. > > I am almost 27 years old. I had congenital hypothyroidism and for > most of my life it has been under control. I am extremely active as a > 100 and 200m sprinter. With that comes the required strength training > and conditioning. On the inside, I have enviable, healthy numbers-- > cholesterol levels are perfect, I have an athlete's BP and so forth. > On the outside, I have strong, defined and even chiseled muscles. And > I'm very flexible. > > However I have not been able to get medical care for two whole years > because of a mistake made by my insurance provider. That has finally > been resolved but in that two year period, I've gained fifty pounds > no matter how much I continue to train, no matter how healthy I eat, > no matter what I do. I'm sure you can imagine how incredibly > depressed that has made me. Fast forward to right this minute, I > fully believe that the hypothyroidism has become very severe. I've > already gone to the ER once and was found to have blood pooling in my > lungs, which explains why I can't breathe right. My hair is extremely > coarse and dry. No matter how much water I drink, my mouth is still > dry. My skin is dry. I know it's gross but I haven't been able to go > to the bathroom since Thanksgiving. I'm used to winter weather > (being from Minneapolis but currently living in California)...but I > find myself freezing. I have absolutely no flexibility right now. My > entire body is swollen beyond recognition. I can't even feel my > thyroid gland through my neck, is how bad it's gotten. And through > it all, I continue to sink into a depression fueled both by what I > see in the mirror and by what the slowed metabolism has done. I know > all the symptoms and I'm suffering every single one of them. > > Anyway, now that the whole insurance thing is finally resolved, I'm > definitely making an appointment with the endocrinologist. How do I > convince him or her that I need the highest dose possible of Levoxyl > (what I take) when I know they're gonna want to inch it up very > reservedly? I need results fast. The Olympics are coming up. > Believe it or not, I actually stand a chance in the Trials but I > can't go looking and feeling like a sack o' potatoes. > > And my biggest question is, if the doctor does listen to me and put > me on the dose I should've been on ages ago, how long before I look > normal again? Trust me, knowing I bike about 30 miles a day in > addition to sprinting, deep water running, lifting and stretching and > coming home to find out I've GAINED more abnormal weight and can't > fit into my clothes and am getting puffier by the hour, this is just > so damn depressing!! > > sorry this is so long. i'm just beyond frustrated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 hi & welcome! I can't believe you've had to deal with this disease for a lifetime, but it sounds like you dealt with it quite well. For your insurance to have been dropped for such a long time and now you're paying the price, well, that's just horrible! I can believe you're depressed! Why did you have blood in your lungs? What happened? Was it a resulted of untreated hypothyroidism or something else? Oh my gosh, I would be going insane if I hadn't been to the bathroom since Thanksgiving!!! That, in and of itself, sounds like an emergency situation to me. I would see a doctor...and FAST! What dosage of Levoxyl were you taking before? I was really, really puffy too back in Feb. when I was diagnosed. I felt results after about 4 weeks I think, and I started losing weight also. But the weight loss hasn't been drastic. I've lost almost 30 pounds since Feb. Of course, I'm not sure what affect rigorous training would have...how fast you would lose weight??? I don't know. Everybody's body is different. I know you're depressed and frustrated, but hang in there. See a doc ASAP!!! Take care, good luck & keep in touch. hugs, sheila athensgold <athensgold@...> wrote: Hey this is good to know...not that you too struggle with this ridiculous condition but that there are other people who understand. I'm new to this group but I just thought I'd share this. I am almost 27 years old. I had congenital hypothyroidism and for most of my life it has been under control. I am extremely active as a 100 and 200m sprinter. With that comes the required strength training and conditioning. On the inside, I have enviable, healthy numbers-- cholesterol levels are perfect, I have an athlete's BP and so forth. On the outside, I have strong, defined and even chiseled muscles. And I'm very flexible. However I have not been able to get medical care for two whole years because of a mistake made by my insurance provider. That has finally been resolved but in that two year period, I've gained fifty pounds no matter how much I continue to train, no matter how healthy I eat, no matter what I do. I'm sure you can imagine how incredibly depressed that has made me. Fast forward to right this minute, I fully believe that the hypothyroidism has become very severe. I've already gone to the ER once and was found to have blood pooling in my lungs, which explains why I can't breathe right. My hair is extremely coarse and dry. No matter how much water I drink, my mouth is still dry. My skin is dry. I know it's gross but I haven't been able to go to the bathroom since Thanksgiving. I'm used to winter weather (being from Minneapolis but currently living in California)...but I find myself freezing. I have absolutely no flexibility right now. My entire body is swollen beyond recognition. I can't even feel my thyroid gland through my neck, is how bad it's gotten. And through it all, I continue to sink into a depression fueled both by what I see in the mirror and by what the slowed metabolism has done. I know all the symptoms and I'm suffering every single one of them. Anyway, now that the whole insurance thing is finally resolved, I'm definitely making an appointment with the endocrinologist. How do I convince him or her that I need the highest dose possible of Levoxyl (what I take) when I know they're gonna want to inch it up very reservedly? I need results fast. The Olympics are coming up. Believe it or not, I actually stand a chance in the Trials but I can't go looking and feeling like a sack o' potatoes. And my biggest question is, if the doctor does listen to me and put me on the dose I should've been on ages ago, how long before I look normal again? Trust me, knowing I bike about 30 miles a day in addition to sprinting, deep water running, lifting and stretching and coming home to find out I've GAINED more abnormal weight and can't fit into my clothes and am getting puffier by the hour, this is just so damn depressing!! sorry this is so long. i'm just beyond frustrated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Hi Sheila Nice to " meet " you! To answer your questions...I had blood in my lungs because my heart slowed down so much that rather than pumping blood through my lungs, the blood just started backing up and pooling there for heaven knows how long. It's definitely a result of untreated hypothyroidism. My blood ox level was so low but there was nothing they could do even though I told them why (the whole insurance mistake). All they could do was intubate and drain it out. Of course between then and now, it's pooling again. I sit here typing and gasping for breath. Sucks doesn't it? I am actually afraid of falling asleep because everything inside me is shutting down and I'm a few breaths away from a myxedema coma. And I've been taking 125 mcg of Levoxyl. The last time I saw a doctor- -my family practitioner not an endocrinologist--was two years ago and she is very passive about treating it. If I complain of these symptoms, she'd only prescribe the next highest which is still too low. I believe that since this is congenital, it can get serious very fast if untreated. But she hasn't even been able to see me because of the stupid insurance error and the Hippocratic Oath. She had my bloodwork done and because I'm extremely active, everything read " normal " which is misleading. My metabolism was working only because I wasn't inactive. I was burning calories only because I was training 3 hrs a day, very rigorously. That said, once this thing is resolved, I expect that I'd drop weight a lot more rapidly and drastically than most because of how much I train. Imagine my frustration when after 4 months of strength training properly, I still couldn't see the muscles I'd had for all of my young adult life! I desperately wanna see my muscles again...and i believe this stupid untreated condition is all that's held me back from the last 4/10ths of a second between me and the Trials. I'm that close yet I look in the mirror and cry at what I see. What dosage are you on? Or do you take Synthroid instead? I am glad you were able to feel back to normal again. I will definitely be going to the doctor--this time an endocrinologist not my family practitioner--immediately. I have to. thanks for your support!! and keep me posted yourself. I've had it all my life but I don't know anyone else with this condition and I'm not sure what it's like in its adult onset. Kyrene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 http://www.inhousedrugstore-europe.com/general/eltroxin.html don't wait another day---they take credit cards and you get it in a week-- > Hi Sheila > Nice to " meet " you! To answer your questions...I had blood in my > lungs because my heart slowed down so much that rather than pumping > blood through my lungs, the blood just started backing up and pooling > there for heaven knows how long. It's definitely a result of > untreated hypothyroidism. My blood ox level was so low but there was > nothing they could do even though I told them why (the whole > insurance mistake). All they could do was intubate and drain it out. > Of course between then and now, it's pooling again. I sit here typing > and gasping for breath. Sucks doesn't it? I am actually afraid of > falling asleep because everything inside me is shutting down and I'm > a few breaths away from a myxedema coma. > > And I've been taking 125 mcg of Levoxyl. The last time I saw a doctor- > -my family practitioner not an endocrinologist--was two years ago and > she is very passive about treating it. If I complain of these > symptoms, she'd only prescribe the next highest which is still too > low. I believe that since this is congenital, it can get serious very > fast if untreated. But she hasn't even been able to see me because of > the stupid insurance error and the Hippocratic Oath. She had my > bloodwork done and because I'm extremely active, everything > read " normal " which is misleading. My metabolism was working only > because I wasn't inactive. I was burning calories only because I was > training 3 hrs a day, very rigorously. That said, once this thing is > resolved, I expect that I'd drop weight a lot more rapidly and > drastically than most because of how much I train. Imagine my > frustration when after 4 months of strength training properly, I > still couldn't see the muscles I'd had for all of my young adult > life! I desperately wanna see my muscles again...and i believe this > stupid untreated condition is all that's held me back from the last > 4/10ths of a second between me and the Trials. I'm that close yet I > look in the mirror and cry at what I see. > > What dosage are you on? Or do you take Synthroid instead? I am glad > you were able to feel back to normal again. I will definitely be > going to the doctor--this time an endocrinologist not my family > practitioner--immediately. I have to. > > thanks for your support!! > and keep me posted yourself. I've had it all my life but I don't know > anyone else with this condition and I'm not sure what it's like in > its adult onset. > > Kyrene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 In a message dated 12/18/2003 1:23:47 PM Pacific Standard Time, hevnbound1@... writes: > I don't know that there is an answer, but I thought my referral was > to get counseling for the root of the problem...not to have another > diet shoved down my throat!! I think, Laurie, that the doctor is trying to make a physical, genetic, cultural, mental, hormonal, and eating problem into a " simple " mental problem. Ask Dr. K (maybe in an email) about how he views excess weight and how complicated the relationships work. He once said, if restrictive procedures worked, then all diets would work, but it is far more complicated than that. It isn't simply a problem of overeating, it is the way your body DEMANDS food, the way your body UTILIZES food, YOUR genetic make up, as well as how YOUR endocrine system works. Many of us have had to educate our doctors when going for our psychological workups! So, keep that chin up, just like you are doing and don't let the ignorance of doctors (including, in my humble opinion, your PCP) get you down. Consider yourself a forerunner to the educational advancement of these doctors! Hugs and blessings, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 > > > Many of us have had to educate our doctors when going for our psychological > workups! So, keep that chin up, just like you are doing and don't let the > ignorance of doctors (including, in my humble opinion, your PCP) get you down. > Ann, It's soooo frustrating! I love my PCP, don't get me wrong. She's very pro-wls. But in an uneducated way. She is the one who wrote my preautorization that got me my first wls when my former doctor wouldn't. He said, basically, that I didn't deserve to have Medicare and Medicaid pay for me to lose weight. He plain out told me that cancer and heart patient's come first and he would NOT refer me for wls. She was totally for it, but thought " even if I lost 50 lbs. it would be worth it " . Well, who has wls to lose only 50 lbs when they weigh 380?? But that's what she kept saying. She tells me to eat whole grain bread...I can't...bread doesn't do well in a gastric bypass patient. She tells me to eat fruits and vegetables (raw)...I can't...I'm fructose intolerant and raw veggies pain me something fierce! She doesn't understand the implications of having the surgery I had. She hasn't even ever HEARD OF the BPD/DS! Imagine that! But she's agreed to do my pre-ops and my RNY surgeon agreed to do my aftercare with Dr. K's input. The one thing my PCP agrees with me on is that the clinic here has no right doing wls when they have no patient education/teaching, no aftercare other than office visits with labs, no support. Many patient's have tried on their own to start patient-run support groups (myself included...it lasted 6 months) but the surgeon and his staff will NOT be involved. Oh, but " they'll be there in spirit " . Oh, well THAT'S gonna help us understand what's happening! THAT'S gonna help us face the challenges and the new stuff we are going to go thru! Sorry, I know I sound bitter. When people tell me they are going to have wls (the RNY) here in Marshfield, I say PLEASE RESEARCH THIS OTHER SURGERY (BPD/DS) AND OTHER DOCS AT OTHER CLINICS/HOSPITALS!! I spent an hour and a half talking to a customer today and drawing diagrams of the different surgeries and telling her the typical results. She had a VBG over 20 years ago and they had to take it down cuz " her body rejected it " . She was throwing up everything she ate. Well, duh! The opening was probably too small!! Anyways...I could go on and on and on...but I won't. I think I've made my point...whatever it is1 lol I'll have to go back to the top and see what it was. haha Holiday hugs, Laurie whose brain doesn't remember things so well after turning 42!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Hi Kyrene! Did I answer this post? I'm so sorry if I didn't. I've been working tons and also have been very sick with bronchitis. Anyway, somehow, I think I neglected to write you back, and I apologize. Jeez, I hope you're okay. I'm worried about you. I think you need to go to your doctor or hospital right away. You're having very serious symptoms. I can only imagine what you're going through. I'm so sorry. I was taking Levoxyl & cytomel. My meds were just changed Wed to Armour 60 mgs. & cytomel .5 mcgs. twice a day. give me an update on how you're doing, so I don't worry myself sick! have you seen a doc yet? how are you doing these days? hugs, Sheila athensgold <athensgold@...> wrote: Hi Sheila Nice to " meet " you! To answer your questions...I had blood in my lungs because my heart slowed down so much that rather than pumping blood through my lungs, the blood just started backing up and pooling there for heaven knows how long. It's definitely a result of untreated hypothyroidism. My blood ox level was so low but there was nothing they could do even though I told them why (the whole insurance mistake). All they could do was intubate and drain it out. Of course between then and now, it's pooling again. I sit here typing and gasping for breath. Sucks doesn't it? I am actually afraid of falling asleep because everything inside me is shutting down and I'm a few breaths away from a myxedema coma. And I've been taking 125 mcg of Levoxyl. The last time I saw a doctor- -my family practitioner not an endocrinologist--was two years ago and she is very passive about treating it. If I complain of these symptoms, she'd only prescribe the next highest which is still too low. I believe that since this is congenital, it can get serious very fast if untreated. But she hasn't even been able to see me because of the stupid insurance error and the Hippocratic Oath. She had my bloodwork done and because I'm extremely active, everything read " normal " which is misleading. My metabolism was working only because I wasn't inactive. I was burning calories only because I was training 3 hrs a day, very rigorously. That said, once this thing is resolved, I expect that I'd drop weight a lot more rapidly and drastically than most because of how much I train. Imagine my frustration when after 4 months of strength training properly, I still couldn't see the muscles I'd had for all of my young adult life! I desperately wanna see my muscles again...and i believe this stupid untreated condition is all that's held me back from the last 4/10ths of a second between me and the Trials. I'm that close yet I look in the mirror and cry at what I see. What dosage are you on? Or do you take Synthroid instead? I am glad you were able to feel back to normal again. I will definitely be going to the doctor--this time an endocrinologist not my family practitioner--immediately. I have to. thanks for your support!! and keep me posted yourself. I've had it all my life but I don't know anyone else with this condition and I'm not sure what it's like in its adult onset. Kyrene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Carole, Having a raised blood plasma viscosity is not the same thing as high level of iron. 2 separate things. If you are on any drugs that would suppress your immune system that would then put you in the " risk category " . Your doctor can explain your blood work further. Terri [ ] (unknown) > > > Hi everyone - I posted a few months ago, but this is my first post > since receiving my test results. > > I have been diagnosed as having Fibromyalgia, Osteoarthritis (mutiple > joints, Carpal Tunnel Syndrome,both arms. Lately I have also been > prescribed Thyroxine, to help with my low thyroid. > > Hopefully, someone can help me, as I am slightly baffled, by what a > Practice Nurse said. On all account I have a raised blood plasma > viscosity, and a slightly high level of Iron in my blood (is this the > same thing). Also, which surprised me I was given a Flu vaccination, > because she felt I was 'in the risk category'!! > > I will ask my doctor for an explanation at some some stage, we have > to ring in between 8.30 am and 9.00 am to make an appointment. At > this time of morning, I find that difficult, also I don't want to > waste a doctor's appointment, on anything trivial. > > Any help would be much appreciated > > Carole > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Many thanks Terri, I have tried to find information on the internet, on blood plasma viscosity and high levels of Iron. All I have managed to find out is that a deficiancy in Iron is more normal LOL All the best - Carole > Carole, > > Having a raised blood plasma viscosity is not the same thing as high level > of iron. 2 separate things. If you are on any drugs that would suppress > your immune system that would then put you in the " risk category " . Your > doctor can explain your blood work further. > > Terri > [ ] (unknown) > > > > > > > > Hi everyone - I posted a few months ago, but this is my first post > > since receiving my test results. > > > > I have been diagnosed as having Fibromyalgia, Osteoarthritis (mutiple > > joints, Carpal Tunnel Syndrome,both arms. Lately I have also been > > prescribed Thyroxine, to help with my low thyroid. > > > > Hopefully, someone can help me, as I am slightly baffled, by what a > > Practice Nurse said. On all account I have a raised blood plasma > > viscosity, and a slightly high level of Iron in my blood (is this the > > same thing). Also, which surprised me I was given a Flu vaccination, > > because she felt I was 'in the risk category'!! > > > > I will ask my doctor for an explanation at some some stage, we have > > to ring in between 8.30 am and 9.00 am to make an appointment. At > > this time of morning, I find that difficult, also I don't want to > > waste a doctor's appointment, on anything trivial. > > > > Any help would be much appreciated > > > > Carole > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi, this is Noreen, the lab techinician I really don't know what the plasma viscosity test is for. It isn't done routinely by the rheumy where I work, nor by any other specialists. Iron on the other hand can be a problem if too high. If only slightly up, it may mean you just consume too much iron. If very elevated, it can be a sign of hemochromatosis, which is a disease of iron toxicity due to improper iron metabolism. It is not very common, and unless you doctor is concerned, I wouldn't worry about it. If you are taking iron supplements now, you probably don't need them, but don't worry unless your doctor is concerned. It's always best to take questions about your lab tests, directly to the doctor. They know your diagnosis and can give you the best clue about what they mean. Noreen [ ] (unknown) > > > > > > > > Hi everyone - I posted a few months ago, but this is my first post > > since receiving my test results. > > > > I have been diagnosed as having Fibromyalgia, Osteoarthritis (mutiple > > joints, Carpal Tunnel Syndrome,both arms. Lately I have also been > > prescribed Thyroxine, to help with my low thyroid. > > > > Hopefully, someone can help me, as I am slightly baffled, by what a > > Practice Nurse said. On all account I have a raised blood plasma > > viscosity, and a slightly high level of Iron in my blood (is this the > > same thing). Also, which surprised me I was given a Flu vaccination, > > because she felt I was 'in the risk category'!! > > > > I will ask my doctor for an explanation at some some stage, we have > > to ring in between 8.30 am and 9.00 am to make an appointment. At > > this time of morning, I find that difficult, also I don't want to > > waste a doctor's appointment, on anything trivial. > > > > Any help would be much appreciated > > > > Carole > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 DEAR GRACE,I THINK IT COULD BE A COMBO OF BOTH WHENEVER I HAVE SEIZURES I'M CONSTANTLY SLURRING MY WORDS.SOMETIMES WITHOUT HAVING THEM LIKE WHEN GETTING VERY NERVOUS IT WOULD MAKE ME SLUR WORDS. I PRAY FOR MICHELLE AND ALL THE OTHERS I HOPE GOD WILL PLACE HIS HEALING HANDS UPON MICHELLE AND YOU TO.HAVE A VERY MERRY CHRISTMAS AND MAY GOD BLESS YOU. P.S. I DON'T KNOW YOU IN PERSON BUT,I FEEL YOU ARE APART OF ME. TAKE CARE LOVE,MARK " Grace H. " <foxyfox8@...> wrote: Hello everyone, My sister told me today, that she could understand my daughter, , much better when she was younger than she can now. Could this be from the seizures or could this be from the meds. She gets mostly simple partials and she's on Trileptal but only 75mg which the neuro said is very low and is probably not doing much for her since it didn't even register on her blood work. I am so upset because I agree with her and I feel like I'm a translator all the time and I'm also having a hard time understanding her which I didn't much before. She's currently taking speech at school and soon will be having private speech therapy, but it doesn't seem to help. Any one else have this problem. Any comments or advice will be greatly appreciated. Grace ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 The same goes for me!!!! I want to say thank you to all you girls on here. I wish you Happy Holidays and a great New Year. My life was turned upside down with good and the bad this year, but I know for 2004 it will be much better for me. I also know that making the right food choices over the next week or so is tougher than usual, but I am not going to beat myself up for a little over indulging. There is always tomorrow. Thanks for all the support and the friendships on this list and this is one of the best things I have done for myself. Your friend in NY (unknown) > > As I take stock of my life, I want to let you all know how > important you have been in my journey. I've laughed and cried with > you people. Though I don't know you personally - you have touched my > life and my heart. In 7 months you have become as important as any > one here in my 'real' life. you all are truly blessings. > > > > , > > I feel the same way! This group has been a wonderful place to find > new friends and support. I wouldn't have gotten as far as I have > without all of you! > > a > > > To unsubscribe DO NOT send a message to the list.Please click on this link and unsubscribe: > 100-plus/join > > > Quote Link to comment Share on other sites More sharing options...
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