Guest guest Posted October 6, 2001 Report Share Posted October 6, 2001 Hi Dawna, thanks for the follow-up. with your slight elevation, it does sound as if 5mg is a more reasonable amount, along with the lifestyle changes you mentioned. 100 mg of Bcomplex sounds like a reasonable amount. that's what i take for general well being and to correct any deficiencies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2001 Report Share Posted October 7, 2001 Hi Dawna, We are on the same course as far as remission. I am 0 for 1 also. Since then have learned a lot, possibly the most valuable info is on Elaine's 101 site. An article entitled "Predicting Remission with ATD's." http://www.suite101.com/article.cfm/graves_disease/63859 Next time the doc thinks it is time to try again, will go over it with her. Your asking about B-complex vitamins reminded me of Adelle and what she had to say about that. These are excerpts from her book "Let's Get Well." Page 314 PP2“During illnesses the need for certain B vitamins increases farmore than for others. The therapeutic amounts suggested by the National Research Council have been criticized as supplying for too little. Its recommendations, like most B-vitamin preparations on the market, completely lack Colin, inositol, PABA, and biotin and are extremely low in folic acid, vitamins B6 and B12. For these reasons I consider them to be dangerous.” Page 315 PP2-3“When the requirements have decreased, I have used tabletssupplying a daily total of 5 milligrams of vitamins B1, B2, and B6; 30 milligrams of pantothenic acid, niacin amide, and PABA; 1,000 milligrams of cholin and inositol; and 15 and 25 micrograms respectfully of vitamin B12 and biotin. Except for folic acid, these proportions are similar to those that maintain health in animals and are found in normal human tissues. Each member of our family takes 5 milligrams of folic acid in addition to these quantities, and I recommend that anyone using B-vitamin tablets obtain folic acid if possible, though it should never be taken without vitamin B12. Unless a yeast or B-complex supplement contains all of these vitamins in roughly the above proportion, I feel it should not be used.” When she wrote this book, folic acid and PABA were not available in any great amounts. This has changed. The drug companies have not. There are 11 B vitamins. Few products claiming to be B-Complex have all of them or have them in the correct proportion. Here is a list:Vitamin B1(thaimine) 50MG Vitamin B2(roboflavin) 50MGVitamin B3(niacin) 50MGVitamin B5(pantothenenic acid) 100MG Vitamin B6(pyridoxine) 50MGVitamin B12 300mcgBiotin 300mcgCholin 100MGFolic Acid 800mcgInositol 100mcgPara-aminobenzoic acid(PABA) 50MG With Graves disease, you especially don't want them to skip PABA as it is extremely important in the utilization of Copper.This according to and confirmed elsewhere. http://webhome.idirect.com/~wolfnowl/thyroid13.htm I wish I could say this is the problem and this is the solution, but I can't. There just don't seem to be any B-complex vitamins out there that Adelle would put in her mouth. Will let you know if I have any luck Update on me Hiya there everyone! It is me Dawna signing in after a bit of an absence. I just wanted to let you guys know that after I quit using Tapazole, went from 15mg to 10mg to 5mg then zero, I am now back on Tapazole because my latest bloodwork showed TSH of <0.01Total T4 = 128Total T3 = 1.8(September 28, 2001)Previously the resuls wereTSH 3.388T4 = 119T3 = 1.59(April 20, 2001)The doctor also asked if it was time for RAI. I said nope because as long as I can manage my hyper with Tap, I will stay away from RAI. He didn't press, so good for him. He suggested I go back to 15mg, but I am going to 5mg. I go back to him in 2 months, so hopefuly 5mg a day will work. I also am taking vitamins, and here is my per day vitamin dosage:5000 Vit A400 Vit D200 Vit E100 Vit C75 B Complex2:1 Calcium (333): Magnesium (167)I think I am going to increase my Vit B complex to 100. What do other people take?By the way, I have gone from 138lb. to 152lb since going on Tap. Even when I went off Tap, the weight continued to pile on. I am now positive it is my laziness for not working out that caused my weight gain based on these latest lab results because it shows that I am not going hypo which would have explained the weight gain. My next resolution is to get myself to the YMCA and sign up for workouts in addition to following a food combination plan (meat/vegetables and carbs/vegetable plan),You can email me at vintage1966@... if you want to let me know what I could be doing better, or just to ask me questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Hi Jen, Your doctor seems very much in the dark about GD. If your TSI is negative you don't have active Graves' disease and may have just had postpartum thyroiditis rather than GD. It takes time for antibodies to be formed, and there must be a proper stimulus. I don't think you are going to have high titers of TSI in the near future. HyperT often precedes hypothyroidism. Here's a quote from the November, 2001 issue of Laboratory Medicine, a publication of the American Society of Clinical Pathologists, "Thyroid autoimmune disease constitutes a spectrum of conditions with primary myxedema (hypothyroidism that leads to total thyroid failure) at one end, running through the different variants of Hasimoto's thyroiditis and Graves' disease at the other end. Clinically, thyroid autoimmune disease usually does not present as a "pure" form but rather may progress from one form to another in the same patient. Primary myxedema is the most common form of spontaneous hypothyroidism in adults and represents the last stage of a chronic inflammatory process which is similar to chronic lymphocytic thyroiditis (Hashimoto's) and occurs in about 25% of treated patients with goiter and a small proportion of those with thyrotoxicosis (hyperthyroidism) treated with anti-thyroid drugs." The title of the article is "Autoimmune Diseases: A Spectrum of Disease Processes." This isn't new info, just an update. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 In a message dated 11/18/2001 5:16:27 PM Eastern Standard Time, bj.howie@... writes: He pretty much told me it was impossible for a person who is hyper to become hypo. Dear Jen, You're right, he is an idiot! Most all of the hypers on this board have been hypo at some time, either before, after, or in between. It sounds like you're doing great, though, so keep up the good work. As for praying that you don't have Graves--I would tell you not to worry about it. I was diagnosed has having Graves, and, as I told you earlier, have been fine for over 4 1/2 years. It is definitely not incurable--I think one of the keys is to find it early (although a few on this board have gone into remission after being sick a while). Good luck, AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 the short term dis is for the sciatica, not the cancer Alley I'm blonde, therefore I'm lost Alley () alleypat@... IM: =alleypat www.alleypat.com AIM: dallasalleypat Add me to your address book... Want a signature like this? update on me Hi folks Hope your new year is starting off with a bang. Mine certainly is! In December I got sciatica and doc put me on short term disability. Last Friday I got an email that I've been laid off at work. Since I haven't been there a year, I'm not protected by FMLA. I had my labs for my cancer treatment done last Monday. Tomorrow I go for my MRI results on the sciatica. Friday I get a port inserted and next Monday I start the cancer treatment. Fun year so far! Alley I'm blonde, therefore I'm lost Alley () alleypat@... IM: =alleypat www.alleypat.com AIM: dallasalleypat Add me to your address book... Want a signature like this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 no I don't qualify for FMLA cuz I haven't been there a year. Alley I'm blonde, therefore I'm lost Alley () alleypat@... IM: =alleypat www.alleypat.com AIM: dallasalleypat Add me to your address book... Want a signature like this? update on me Hi folks Hope your new year is starting off with a bang. Mine certainly is! In December I got sciatica and doc put me on short term disability. Last Friday I got an email that I've been laid off at work. Since I haven't been there a year, I'm not protected by FMLA. I had my labs for my cancer treatment done last Monday. Tomorrow I go for my MRI results on the sciatica. Friday I get a port inserted and next Monday I start the cancer treatment. Fun year so far! Alley I'm blonde, therefore I'm lost Alley () alleypat@... IM: =alleypat www.alleypat.com AIM: dallasalleypat Add me to your address book... Want a signature like this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Hey - Well glad you don't have any Cancer. But too bad the news wasn't exactly wonderful. I don't know anything about Iron infusions.. that sounds yuki. Now, Im curious... is the problem that you're marrow isn't producing enough red blood cells? If so, they can do Epogen shots which is much faster than the infusions and they work well. They kinda hurt though but I suppose we are all kinda used to pain. Maybe find out if there are other options as well as possible side effects of these infusions especially given the side effects you have already had with the oral Iron supplements. Maybe your body isn't processing the iron properly but the labs should tell them that. That's the issue I have with my anemia is that my body doesn't seem to take in the iron very well .. I forgot what lab it is that they look at to know this is the issue. I had been wondering if this situation was your arthritis all along because it's so common to have hematologic stuff with systemic type diseases. I do although they aren't as severe as yours are but I have anemia quite often and it's ussualy the hemacrit/hemaglobin that's low for me. I eat tons of leafy green veggies.... in fact, I do juicing with carrots and kale/spinach things like that and I STILL have anemia... again... the iron binding to RBC issues. For me, it was decided that it was my JRA..... When your doctor wanted to stop or didn't want to have you on treatment for JAS until this was resolved, I was thinking.... omg, I bet this is because of her JAS in the first place and now that she isn't getting treatment for it, it's going to keep being a problem but I didn't wan tto say that because it's not like I'm a doctor. It's just that I have heard of this type of situation before and I have had it myself though with JRA. Anyways, even though it sucks, I hope that you and your Rheumy find a good med that will help calm the JAS down and as a result bring your blood count/hemaglobin up. And find out about Epogen.. if that's an option for you. IssadoraOn 9/29/07, Salvucci <lsalvucci42@...> wrote: Well I went to the hematologist yesterday and the news was so, so. They still are not sure why my hemoglobin dropped so much. According to the test there is no sign of malignancy, no intestinal bleeding. So really they have no clue. Apparently he was really worried that I had lymphoma but luckily that is not the case. As for the iron supplements they are not really working that well so he is now switching me to iron infusions. Does anyone have experience with that? I will be going a couple times a week for a few weeks hopefully that will bring up my iron count and get me feeling good again. Basically what I got from him is that he believes my JAS used to present one way and he feels that now it is presenting another way, hematologically. So he's pushing me to get into see my rheumy asap, he thinks I need to get re-started on treatment right away. I think that sucks, but whatever, I guess i just need to start feeling better. So that's basically that.. Love always (JAS, 22) __________________________________________________________ Luggage? GPS? Comic books? Check out fitting gifts for grads at Search http://search./search?fr=oni_on_mail & p=graduation+gifts & cs=bz -- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Issy, Sorry to hear about your cholesterol. Maybe it will go down with diet change, although they do say that for some people its just hereditary and diet doesn't really seem to be an influencing factor. Kind of stinks to take so many pills and to still feel so lousy. Hope that things start getting better for you soon. sonia (aundrea 12 fibro)- -- In , Issadora <FlyfreeIzzie@...> wrote: > > Hi everyone- > > Nothing much good to say over here. I found out today that for the first > time ever, my cholesterol is significantly elevated and even though I'm > overweight, it was normal 5 months ago and always before. The doctor put me > on medication for me! I reacted with " I NEED medication for it NOW " ... I > can't believe it changed like that in 5 months... gee, it's not like I eat > at Mcs! > > I think part of it is the fact that things ahve gone up so high in terms of > groceries and I eat primarily organic. Over some months,. we haven't been > able to afford so much in terms of our usual array of fruits, veggies and > stuff and I think this must be the culprit but WOW. > > I'm really bummed because this is now the 11th medication added to my list. > I don't want to even know the break down of actual number of individual > pills I take but all I know is that ELEVEN is WAY to many for a 30 year old. > :( > > In additon, I STILL have the tenosynovitis in my right hand and it has > become a issue in terms of chronic inflammation and grip strength weakness. > As a result, my doctor is sending me to OT to see what they can do to help. > I don't see what the point is.... I already have a splint... blah... > > And just to add to all of that, I have Bursitis in my left elbow. It has > been hurting me persistantly for about a month now and so that is what it > is. At least it's something that will go away but the big problem is > positioning. I dont like it straight or bent.... and if i lean on my arms in > any way near that elbow, its terribly painful. I did not realize how much I > relied on my arms to help me out and so now, I do. Typing is aggrivating > because I'm laying in bed with my ;laptop and my elbow is bent too much so > it's very stiff and unhappy. The doctor told me to ice it a lot.... that's > the treatment I suppose.... =/ I have been doing that.... > > So yeh.. life is DANDY and FIne.... > > yay > > Issadora > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 yeh,,, well being that my cholesterol has always been really good, im pretty sure it was the last few months where things have been so expensive and we had some dietery changes due to price however we have gone back to our regular way despite the price and so I will see what happens when I get blood drawn next month. Im just dissapointed that my doctor would put me on medication so fast without benefit of trying another route first.... that concerns me... Thanks for your response. Issasdora On Sat, Jul 19, 2008 at 7:01 PM, sonia1md <sonia1md@...> wrote: > Issy, > > Sorry to hear about your cholesterol. Maybe it will go down with > diet change, although they do say that for some people its just > hereditary and diet doesn't really seem to be an influencing factor. > > Kind of stinks to take so many pills and to still feel so lousy. > > Hope that things start getting better for you soon. > > sonia (aundrea 12 fibro)- > > > -- In < %40>, Issadora > <FlyfreeIzzie@...> wrote: > > > > Hi everyone- > > > > Nothing much good to say over here. I found out today that for the > first > > time ever, my cholesterol is significantly elevated and even though > I'm > > overweight, it was normal 5 months ago and always before. The > doctor put me > > on medication for me! I reacted with " I NEED medication for it > NOW " ... I > > can't believe it changed like that in 5 months... gee, it's not > like I eat > > at Mcs! > > > > I think part of it is the fact that things ahve gone up so high in > terms of > > groceries and I eat primarily organic. Over some months,. we > haven't been > > able to afford so much in terms of our usual array of fruits, > veggies and > > stuff and I think this must be the culprit but WOW. > > > > I'm really bummed because this is now the 11th medication added to > my list. > > I don't want to even know the break down of actual number of > individual > > pills I take but all I know is that ELEVEN is WAY to many for a 30 > year old. > > :( > > > > In additon, I STILL have the tenosynovitis in my right hand and it > has > > become a issue in terms of chronic inflammation and grip strength > weakness. > > As a result, my doctor is sending me to OT to see what they can do > to help. > > I don't see what the point is.... I already have a splint... blah... > > > > And just to add to all of that, I have Bursitis in my left elbow. > It has > > been hurting me persistantly for about a month now and so that is > what it > > is. At least it's something that will go away but the big problem is > > positioning. I dont like it straight or bent.... and if i lean on > my arms in > > any way near that elbow, its terribly painful. I did not realize > how much I > > relied on my arms to help me out and so now, I do. Typing is > aggrivating > > because I'm laying in bed with my ;laptop and my elbow is bent too > much so > > it's very stiff and unhappy. The doctor told me to ice it a lot.... > that's > > the treatment I suppose.... =/ I have been doing that.... > > > > So yeh.. life is DANDY and FIne.... > > > > yay > > > > Issadora > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 Hi everyone! I haven't been posting as much lately, because I've been so busy - yay! So I thought I'd give an update here. For the newbies, here is a bit of my history. I am 33 years old and live in northern Illinois. I started having some issues in 1999, and had my spine checked. All of the orthos I saw at that time commented on how great my fusion looked. I was diagnosed with MS in 2002, and gave up looking at spinal problems. I became pregnant shortly after with our first daughter, and started using a quad cane. We wanted to try for another child soon after. My neuro at that time told me that people with MS shouldn't get pregnant " because what if they end up in a wheelchair? " I wanted to slug him, because physical ability has nothing to do with being a good parent. When my daughter was about 9 months old, I got pregnant again with my second daughter. My MS went into full gear and I had 4 relapses during that pregnancy, never fully recovering from any of them. After my daughter was born, I thought that things would settle down, but they didn't. I went from using a quad cane to using a walker in the house, and wheelchair when going out. I started chemo treatments to slow the progression of the disease, and they worked very well for me. I still felt like things weren't quite right with my back, and that MS wasn't explaining everything. I found these groups and decided to see a flatback specialist to check my spine, instead of just a regular ortho. Thanks to these lists, I found Dr Ondra in Chicago. I ended up having his partner, Dr Koski, and I was very happy with him. In 2007, I underwent revision surgery, which when combined with my MS, has me in a powerchair now. My bladder pretty much was out of control too. I started self-cathing in 2006, and that kept the accidents down for a while. But then it wasn't enough, so I got a suprapubic catheter (tube inserted directly into my bladder thru a hole in my abdomen, and I wear a bag on my leg) placed in Feb of 2008. It has been wonderful, tho now I deal with recurring, antibiotic-resistant UTIs. My MS started revving up again, so I restarted chemo last year. I've ended up getting 7 doses total now. This year has been great for me. We got a van that I can drive from my wheelchair - so for the first time in almost 4 years, I am able to drive again. I had spent the last 3-4 years sitting at home, dependent on asking others to drive me to dr appointments, drive my kids places, help with grocery shopping, etc. Now I am busy trying to do everything myself. I LOVE it!!! I love being able to drive the kids to the library, I love being able to go pick up something from the store when >I< want to get it, I love being able to drive my younger daughter to preschool. Anyways - you get the idea. It's amazing to have that independence back when it's been taken away for so long! My kids are now 4 and 5 years old, and they love that I can now take them places! I also changed my physical therapy around. I have amazing insurance, which covers unlimited PT at 100% once I have reached my out-of pocket minimum. And in IL, they passed a law that insurance companies must allow PT for people with MS. Usually PT is only approved for short-term for people who will likely have an improvement. People with MS who need it to maintain their current level of health are denied. But now they must cover maintenance PT. So I have been getting in-home physical therapy 3 times per week for about 3 years. Last month, I decided to try outpatient therapy instead. I was told by my local urologists to not swim with my suprapubic catheter, but after talking to several people online, I decided to ignore that advice. It seems that MANY people with those caths swim just fine, so these local uros don't know what they're talking about. The water feels wonderful. So I do aquatherapy twice a week, and regular therapy (stretching, weight training) the 3rd day. I have seen some improvements over the last month. So that's the main reason I haven't been posting as much lately. I'm much more busy living my life than I have been in the recent past We took our first family vacation this year, and it was great. Two weekends ago, my husband surprised me with tickets to the opening game of the Bears/Packers up at Lambeau Field. It was awesome And next spring, we're planning on taking a trip to Central America (me, hubby & the kids) for a family wedding. Anyways, sorry for the long post, but I wanted to welcome to the new members we've had lately. This is a great place for info and support about flatback! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 , You really do have an amazing story, and although I've been around her for forever, it is really nice to re-read when telling your story to the newer members. Welcome back (so to speak) and I'm so happy that things are going so well for you. It's wonderful news! D (RI) > > Hi everyone! > > I haven't been posting as much lately, because I've been so busy - yay! So I thought I'd give an update here. > > For the newbies, here is a bit of my history. I am 33 years old and live in northern Illinois. I started having some issues in 1999, and had my spine checked. All of the orthos I saw at that time commented on how great my fusion looked. I was diagnosed with MS in 2002, and gave up looking at spinal problems. I became pregnant shortly after with our first daughter, and started using a quad cane. We wanted to try for another child soon after. My neuro at that time told me that people with MS shouldn't get pregnant " because what if they end up in a wheelchair? " I wanted to slug him, because physical ability has nothing to do with being a good parent. When my daughter was about 9 months old, I got pregnant again with my second daughter. My MS went into full gear and I had 4 relapses during that pregnancy, never fully recovering from any of them. After my daughter was born, I thought that things would settle down, but they didn't. > > I went from using a quad cane to using a walker in the house, and wheelchair when going out. I started chemo treatments to slow the progression of the disease, and they worked very well for me. > > I still felt like things weren't quite right with my back, and that MS wasn't explaining everything. I found these groups and decided to see a flatback specialist to check my spine, instead of just a regular ortho. Thanks to these lists, I found Dr Ondra in Chicago. I ended up having his partner, Dr Koski, and I was very happy with him. In 2007, I underwent revision surgery, which when combined with my MS, has me in a powerchair now. My bladder pretty much was out of control too. I started self-cathing in 2006, and that kept the accidents down for a while. But then it wasn't enough, so I got a suprapubic catheter (tube inserted directly into my bladder thru a hole in my abdomen, and I wear a bag on my leg) placed in Feb of 2008. It has been wonderful, tho now I deal with recurring, antibiotic-resistant UTIs. > > My MS started revving up again, so I restarted chemo last year. I've ended up getting 7 doses total now. This year has been great for me. We got a van that I can drive from my wheelchair - so for the first time in almost 4 years, I am able to drive again. I had spent the last 3-4 years sitting at home, dependent on asking others to drive me to dr appointments, drive my kids places, help with grocery shopping, etc. Now I am busy trying to do everything myself. I LOVE it!!! I love being able to drive the kids to the library, I love being able to go pick up something from the store when >I< want to get it, I love being able to drive my younger daughter to preschool. Anyways - you get the idea. It's amazing to have that independence back when it's been taken away for so long! My kids are now 4 and 5 years old, and they love that I can now take them places! > > I also changed my physical therapy around. I have amazing insurance, which covers unlimited PT at 100% once I have reached my out-of pocket minimum. And in IL, they passed a law that insurance companies must allow PT for people with MS. Usually PT is only approved for short-term for people who will likely have an improvement. People with MS who need it to maintain their current level of health are denied. But now they must cover maintenance PT. So I have been getting in-home physical therapy 3 times per week for about 3 years. Last month, I decided to try outpatient therapy instead. I was told by my local urologists to not swim with my suprapubic catheter, but after talking to several people online, I decided to ignore that advice. It seems that MANY people with those caths swim just fine, so these local uros don't know what they're talking about. The water feels wonderful. So I do aquatherapy twice a week, and regular therapy (stretching, weight training) the 3rd day. I have seen some improvements over the last month. > > So that's the main reason I haven't been posting as much lately. I'm much more busy living my life than I have been in the recent past We took our first family vacation this year, and it was great. Two weekends ago, my husband surprised me with tickets to the opening game of the Bears/Packers up at Lambeau Field. It was awesome And next spring, we're planning on taking a trip to Central America (me, hubby & the kids) for a family wedding. > > Anyways, sorry for the long post, but I wanted to welcome to the new members we've had lately. This is a great place for info and support about flatback! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 , Loved reading your update. You are always so upbeat no matter what but your joie de vivre oozes now! You are sunshine on the web! > > Hi everyone! > > I haven't been posting as much lately, because I've been so busy - yay! So I thought I'd give an update here. > > For the newbies, here is a bit of my history. I am 33 years old and live in northern Illinois. I started having some issues in 1999, and had my spine checked. All of the orthos I saw at that time commented on how great my fusion looked. I was diagnosed with MS in 2002, and gave up looking at spinal problems. I became pregnant shortly after with our first daughter, and started using a quad cane. We wanted to try for another child soon after. My neuro at that time told me that people with MS shouldn't get pregnant " because what if they end up in a wheelchair? " I wanted to slug him, because physical ability has nothing to do with being a good parent. When my daughter was about 9 months old, I got pregnant again with my second daughter. My MS went into full gear and I had 4 relapses during that pregnancy, never fully recovering from any of them. After my daughter was born, I thought that things would settle down, but they didn't. > > I went from using a quad cane to using a walker in the house, and wheelchair when going out. I started chemo treatments to slow the progression of the disease, and they worked very well for me. > > I still felt like things weren't quite right with my back, and that MS wasn't explaining everything. I found these groups and decided to see a flatback specialist to check my spine, instead of just a regular ortho. Thanks to these lists, I found Dr Ondra in Chicago. I ended up having his partner, Dr Koski, and I was very happy with him. In 2007, I underwent revision surgery, which when combined with my MS, has me in a powerchair now. My bladder pretty much was out of control too. I started self-cathing in 2006, and that kept the accidents down for a while. But then it wasn't enough, so I got a suprapubic catheter (tube inserted directly into my bladder thru a hole in my abdomen, and I wear a bag on my leg) placed in Feb of 2008. It has been wonderful, tho now I deal with recurring, antibiotic-resistant UTIs. > > My MS started revving up again, so I restarted chemo last year. I've ended up getting 7 doses total now. This year has been great for me. We got a van that I can drive from my wheelchair - so for the first time in almost 4 years, I am able to drive again. I had spent the last 3-4 years sitting at home, dependent on asking others to drive me to dr appointments, drive my kids places, help with grocery shopping, etc. Now I am busy trying to do everything myself. I LOVE it!!! I love being able to drive the kids to the library, I love being able to go pick up something from the store when >I< want to get it, I love being able to drive my younger daughter to preschool. Anyways - you get the idea. It's amazing to have that independence back when it's been taken away for so long! My kids are now 4 and 5 years old, and they love that I can now take them places! > > I also changed my physical therapy around. I have amazing insurance, which covers unlimited PT at 100% once I have reached my out-of pocket minimum. And in IL, they passed a law that insurance companies must allow PT for people with MS. Usually PT is only approved for short-term for people who will likely have an improvement. People with MS who need it to maintain their current level of health are denied. But now they must cover maintenance PT. So I have been getting in-home physical therapy 3 times per week for about 3 years. Last month, I decided to try outpatient therapy instead. I was told by my local urologists to not swim with my suprapubic catheter, but after talking to several people online, I decided to ignore that advice. It seems that MANY people with those caths swim just fine, so these local uros don't know what they're talking about. The water feels wonderful. So I do aquatherapy twice a week, and regular therapy (stretching, weight training) the 3rd day. I have seen some improvements over the last month. > > So that's the main reason I haven't been posting as much lately. I'm much more busy living my life than I have been in the recent past We took our first family vacation this year, and it was great. Two weekends ago, my husband surprised me with tickets to the opening game of the Bears/Packers up at Lambeau Field. It was awesome And next spring, we're planning on taking a trip to Central America (me, hubby & the kids) for a family wedding. > > Anyways, sorry for the long post, but I wanted to welcome to the new members we've had lately. This is a great place for info and support about flatback! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 I second that!!PaSent from my iPhoneOn Sep 28, 2009, at 10:41 AM, "threekids2parents" <catherine.m.tracy@...> wrote: , Loved reading your update. You are always so upbeat no matter what but your joie de vivre oozes now! You are sunshine on the web! > > Hi everyone! > > I haven't been posting as much lately, because I've been so busy - yay! So I thought I'd give an update here. > > For the newbies, here is a bit of my history. I am 33 years old and live in northern Illinois. I started having some issues in 1999, and had my spine checked. All of the orthos I saw at that time commented on how great my fusion looked. I was diagnosed with MS in 2002, and gave up looking at spinal problems. I became pregnant shortly after with our first daughter, and started using a quad cane. We wanted to try for another child soon after. My neuro at that time told me that people with MS shouldn't get pregnant "because what if they end up in a wheelchair?" I wanted to slug him, because physical ability has nothing to do with being a good parent. When my daughter was about 9 months old, I got pregnant again with my second daughter. My MS went into full gear and I had 4 relapses during that pregnancy, never fully recovering from any of them. After my daughter was born, I thought that things would settle down, but they didn't. > > I went from using a quad cane to using a walker in the house, and wheelchair when going out. I started chemo treatments to slow the progression of the disease, and they worked very well for me. > > I still felt like things weren't quite right with my back, and that MS wasn't explaining everything. I found these groups and decided to see a flatback specialist to check my spine, instead of just a regular ortho. Thanks to these lists, I found Dr Ondra in Chicago. I ended up having his partner, Dr Koski, and I was very happy with him. In 2007, I underwent revision surgery, which when combined with my MS, has me in a powerchair now. My bladder pretty much was out of control too. I started self-cathing in 2006, and that kept the accidents down for a while. But then it wasn't enough, so I got a suprapubic catheter (tube inserted directly into my bladder thru a hole in my abdomen, and I wear a bag on my leg) placed in Feb of 2008. It has been wonderful, tho now I deal with recurring, antibiotic-resistant UTIs. > > My MS started revving up again, so I restarted chemo last year. I've ended up getting 7 doses total now. This year has been great for me. We got a van that I can drive from my wheelchair - so for the first time in almost 4 years, I am able to drive again. I had spent the last 3-4 years sitting at home, dependent on asking others to drive me to dr appointments, drive my kids places, help with grocery shopping, etc. Now I am busy trying to do everything myself. I LOVE it!!! I love being able to drive the kids to the library, I love being able to go pick up something from the store when >I< want to get it, I love being able to drive my younger daughter to preschool. Anyways - you get the idea. It's amazing to have that independence back when it's been taken away for so long! My kids are now 4 and 5 years old, and they love that I can now take them places! > > I also changed my physical therapy around. I have amazing insurance, which covers unlimited PT at 100% once I have reached my out-of pocket minimum. And in IL, they passed a law that insurance companies must allow PT for people with MS. Usually PT is only approved for short-term for people who will likely have an improvement. People with MS who need it to maintain their current level of health are denied. But now they must cover maintenance PT. So I have been getting in-home physical therapy 3 times per week for about 3 years. Last month, I decided to try outpatient therapy instead. I was told by my local urologists to not swim with my suprapubic catheter, but after talking to several people online, I decided to ignore that advice. It seems that MANY people with those caths swim just fine, so these local uros don't know what they're talking about. The water feels wonderful. So I do aquatherapy twice a week, and regular therapy (stretching, weight training) the 3rd day. I have seen some improvements over the last month. > > So that's the main reason I haven't been posting as much lately. I'm much more busy living my life than I have been in the recent past We took our first family vacation this year, and it was great. Two weekends ago, my husband surprised me with tickets to the opening game of the Bears/Packers up at Lambeau Field. It was awesome And next spring, we're planning on taking a trip to Central America (me, hubby & the kids) for a family wedding. > > Anyways, sorry for the long post, but I wanted to welcome to the new members we've had lately. This is a great place for info and support about flatback! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 , You are doing great girl! It is wonderful to hear how much you are doing and how much you are getting around with your girls. I know they must love having you with then for important events AND the everyday trips to the library. I am very excited to hear that you have been able to get in the water. I know that you are really struggling to regain your strength and there are not many options where you are as safe from falls as you are in the water. I bet you will see remarkable improvement in the coming months! Were you a swimmer before or are you just doing stationary work for now? The other thing that I have learned recently about the water and one reason that it is so theraputic has to do with the effect of hydrostatic pressure on the water on your body...kind of like giving all your organs a little massage which benefits everything by keeping the blood flowing! I know we all want to hear what your routine is like...so when you get a chance please fill us in. Take Care, cam > > > > Hi everyone! > > > > I haven't been posting as much lately, because I've been so busy - yay! So I thought I'd give an update here. > > > > For the newbies, here is a bit of my history. I am 33 years old and live in northern Illinois. I started having some issues in 1999, and had my spine checked. All of the orthos I saw at that time commented on how great my fusion looked. I was diagnosed with MS in 2002, and gave up looking at spinal problems. I became pregnant shortly after with our first daughter, and started using a quad cane. We wanted to try for another child soon after. My neuro at that time told me that people with MS shouldn't get pregnant " because what if they end up in a wheelchair? " I wanted to slug him, because physical ability has nothing to do with being a good parent. When my daughter was about 9 months old, I got pregnant again with my second daughter. My MS went into full gear and I had 4 relapses during that pregnancy, never fully recovering from any of them. After my daughter was born, I thought that things would settle down, but they didn't. > > > > I went from using a quad cane to using a walker in the house, and wheelchair when going out. I started chemo treatments to slow the progression of the disease, and they worked very well for me. > > > > I still felt like things weren't quite right with my back, and that MS wasn't explaining everything. I found these groups and decided to see a flatback specialist to check my spine, instead of just a regular ortho. Thanks to these lists, I found Dr Ondra in Chicago. I ended up having his partner, Dr Koski, and I was very happy with him. In 2007, I underwent revision surgery, which when combined with my MS, has me in a powerchair now. My bladder pretty much was out of control too. I started self-cathing in 2006, and that kept the accidents down for a while. But then it wasn't enough, so I got a suprapubic catheter (tube inserted directly into my bladder thru a hole in my abdomen, and I wear a bag on my leg) placed in Feb of 2008. It has been wonderful, tho now I deal with recurring, antibiotic-resistant UTIs. > > > > My MS started revving up again, so I restarted chemo last year. I've ended up getting 7 doses total now. This year has been great for me. We got a van that I can drive from my wheelchair - so for the first time in almost 4 years, I am able to drive again. I had spent the last 3-4 years sitting at home, dependent on asking others to drive me to dr appointments, drive my kids places, help with grocery shopping, etc. Now I am busy trying to do everything myself. I LOVE it!!! I love being able to drive the kids to the library, I love being able to go pick up something from the store when >I< want to get it, I love being able to drive my younger daughter to preschool. Anyways - you get the idea. It's amazing to have that independence back when it's been taken away for so long! My kids are now 4 and 5 years old, and they love that I can now take them places! > > > > I also changed my physical therapy around. I have amazing insurance, which covers unlimited PT at 100% once I have reached my out-of pocket minimum. And in IL, they passed a law that insurance companies must allow PT for people with MS. Usually PT is only approved for short-term for people who will likely have an improvement. People with MS who need it to maintain their current level of health are denied. But now they must cover maintenance PT. So I have been getting in-home physical therapy 3 times per week for about 3 years. Last month, I decided to try outpatient therapy instead. I was told by my local urologists to not swim with my suprapubic catheter, but after talking to several people online, I decided to ignore that advice. It seems that MANY people with those caths swim just fine, so these local uros don't know what they're talking about. The water feels wonderful. So I do aquatherapy twice a week, and regular therapy (stretching, weight > training) the 3rd day. I have seen some improvements over the last month. > > > > So that's the main reason I haven't been posting as much lately. I'm much more busy living my life than I have been in the recent past We took our first family vacation this year, and it was great. Two weekends ago, my husband surprised me with tickets to the opening game of the Bears/Packers up at Lambeau Field. It was awesome And next spring, we're planning on taking a trip to Central America (me, hubby & the kids) for a family wedding. > > > > Anyways, sorry for the long post, but I wanted to welcome to the new members we've had lately. This is a great place for info and support about flatback! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2009 Report Share Posted September 30, 2009 HI , I am so happy for you! There's nothing quite like being able to getting back to a " normal " life! You have a wonderful resilience and a powerful spirit that have served you well. You are a great example for your children. Bonnie Quote Link to comment Share on other sites More sharing options...
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