Guest guest Posted December 8, 2005 Report Share Posted December 8, 2005 Hi, First, welcome. Second, you are hopefully aware by now that HSGs are very inaccurate in determining the extent or type of a mullerian anomaly - though they are generally used to determine whether or not an MA exists. Weird, huh? The MRI can be very useful, provided it is done right, and interpreted right. Unfortunately, many women are mis-diagnosed because their MRI was done poorly, or the radiologist who read it didn't really know what they were looking at, or the RE or obgyn who receives the report accepted it at face value without examining the images themselves. The 8-9 mm transverse measurement indicates the thickness - side to side. Though it's unclear from the description whether it's 8-9 mm just at the top of the septum, or the entire length. " from the superior extent of the endometrial canal " means (I think) the length from top to bottom of the septum. From my understanding, 1 cm or less is considered nominal. 1.5 is a bit gray - there are a number of women who have been 1.5cm AFTER resection, and their surgeons have opted not to do another resection, and they've done very well. That being said, there have been others that have had continuing problems until they were resected to under 1.5. It's often a judgement call on the part of the doc. > The septum appears to contain some myometrial tissue and > there > does not appear to be significant indentation of the myometrium over > the area of the spetum. I also have a number of dilated parametrial > vessels...whatever that means. Ok, here's my best stab at this (some of our best " interpreters " recently have had their babes, so they aren't on the board - understandably!) When it says that the septum contains some myometrial tissue, it means that it has some muscle tissue characteristics in it - i.e., some of the septum is composed of the same tissue that the walls of the normal part of your uterus are composed of. The reference to dilated parametrial vessels means (again, I think) that the blood vessels in the tissue on both sides of the cervix are expanded. > I do not consult with my ObGyn until next week. In the case of a > septum, it was mentioned that I would have a hysterscopy to retract > the septum, followed by up to 6 trials of clomid with timed > intercoares before being referred for IVF. Whoa. Slow down. First, I would recommend that you don't proceed with ANY surgery without a second opinion, preferably by a reproductive endocrinologist who has A LOT of experience with MAs. Especially since your septum may be so minor as to not warrant surgery. If your septum is as shallow and narrow as you've been told, you may not need surgery to resect it, but this may be something that can't be determined until they do a hysteroscopy to visualize the septum (and resect it, if need be, at the same time). Also, and please forgive the question, have you had any history of losses? Since you are in more of a gray area with the size of the septum, you may do just fine without surgery. We have women on the board who have gone full term (or nearly full term) with complete or nearly complete septums. Second, do you have any history of infertility? Simply having an MA is NOT an absolute indication that you need to pursue hormonal therapy or assisted repro techniques. Finally, even though the chances for loss with a complete, thick, wide, " really bad " septums can run as high as 80% (according to some sources), if you DO have a septum, it is likely not in the " really bad " category, and even if it WERE in the " really bad " category, it is very likely operable (and nearly ALL are operable). Resection improves chances of carrying a successful pregnancy back to, or nearly back to, that of a non-MA uterus. Hope this helps, Ann __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2005 Report Share Posted December 8, 2005 Hi Ann, Thanks so much for the input. To try to answer you questions... I will find out on December 13th what my ObGyn will recommend next given the new results. I obtained a copy of my MRI report prior to my follow-up consultation. Given previous discussion with my ObGyn I beleive the next step will be to perform the hysterscopy. I am unclear at this time if he will perform a laprascopy at the same time (it is possible given it is a mandatory part of the protocol before moving to IVF). He did indicate that the hys/lap was the gold standard for diagnostics, however he wanted to begin with the MRI because it was less invasive. I am unaware of the radiologists experience. However the report did comment that there was no visible abnormality to the outer contour of the uterus. It did not explain if the transverse width was the same the entire length of the septum. My ObGyn will receive a copy of the report and I don't beleive will view the MRI. I actually had to travel some distance away to recieve the MRI. I have consulted with two family practitioners with rotations in obstetrics and gynecology. The first doctor recommeded that I continue with my ObGyn as he is well recognized for his work in the field, leading technology, good results and so on. I was also told by this doctor that an RE was not necessary as I do not have a hormonal problem. The second doctor is consulting with her colleages regarding my history, exam findings and any future recommendations. I am waiting to hear back from her. I also consulted with a second ObGyn. She indicated that I am in good hands with my current care provider. That he is more than qualified to manage my case. That his current managment plan is appropriate and that he is a " talented gyn surgeon. " She suggested that I stick with him because I want him on my side in the future and to manage any pregnancies. She was encouraged by my MRI results and thought the varicosties were of no clinical significance. I have not experienced any losses. I have not been able to fall pregnant at all. We have been trying for 17 cycles prior to the results of the HSG. My ObGyns position at that time was, " once we get you pregnant we want to keep you pregnant. " I suppose we will see what he says next week given the MRI results. So what do you think? Thanks in advance! > > Hi, > > First, welcome. > > Second, you are hopefully aware by now that HSGs are very inaccurate in > determining the extent or type of a mullerian anomaly - though they are > generally used to determine whether or not an MA exists. Weird, huh? > The MRI can be very useful, provided it is done right, and interpreted > right. Unfortunately, many women are mis-diagnosed because their MRI > was done poorly, or the radiologist who read it didn't really know what > they were looking at, or the RE or obgyn who receives the report > accepted it at face value without examining the images themselves. > > The 8-9 mm transverse measurement indicates the thickness - side to > side. Though it's unclear from the description whether it's 8-9 mm > just at the top of the septum, or the entire length. > > " from the superior extent of the endometrial canal " means (I think) the > length from top to bottom of the septum. From my understanding, 1 cm > or less is considered nominal. 1.5 is a bit gray - there are a number > of women who have been 1.5cm AFTER resection, and their surgeons have > opted not to do another resection, and they've done very well. That > being said, there have been others that have had continuing problems > until they were resected to under 1.5. It's often a judgement call on > the part of the doc. > > > The septum appears to contain some myometrial tissue and > > there > > does not appear to be significant indentation of the myometrium over > > the area of the spetum. I also have a number of dilated parametrial > > vessels...whatever that means. > > Ok, here's my best stab at this (some of our best " interpreters " > recently have had their babes, so they aren't on the board - > understandably!) When it says that the septum contains some myometrial > tissue, it means that it has some muscle tissue characteristics in it - > i.e., some of the septum is composed of the same tissue that the walls > of the normal part of your uterus are composed of. The reference to > dilated parametrial vessels means (again, I think) that the blood > vessels in the tissue on both sides of the cervix are expanded. > > > I do not consult with my ObGyn until next week. In the case of a > > septum, it was mentioned that I would have a hysterscopy to retract > > the septum, followed by up to 6 trials of clomid with timed > > intercoares before being referred for IVF. > > Whoa. Slow down. First, I would recommend that you don't proceed with > ANY surgery without a second opinion, preferably by a reproductive > endocrinologist who has A LOT of experience with MAs. Especially since > your septum may be so minor as to not warrant surgery. If your septum > is as shallow and narrow as you've been told, you may not need surgery > to resect it, but this may be something that can't be determined until > they do a hysteroscopy to visualize the septum (and resect it, if need > be, at the same time). > > Also, and please forgive the question, have you had any history of > losses? Since you are in more of a gray area with the size of the > septum, you may do just fine without surgery. We have women on the > board who have gone full term (or nearly full term) with complete or > nearly complete septums. > > Second, do you have any history of infertility? Simply having an MA is > NOT an absolute indication that you need to pursue hormonal therapy or > assisted repro techniques. > > Finally, even though the chances for loss with a complete, thick, wide, > " really bad " septums can run as high as 80% (according to some > sources), if you DO have a septum, it is likely not in the " really bad " > category, and even if it WERE in the " really bad " category, it is very > likely operable (and nearly ALL are operable). Resection improves > chances of carrying a successful pregnancy back to, or nearly back to, > that of a non-MA uterus. > > Hope this helps, > > Ann > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2005 Report Share Posted December 9, 2005 Hi, Would it be possible for you to obtain the actual films from your MRI? This is just my opinion, but I *really* think that if possible, you should consult with an RE, and that you should provide that RE not with only the MRI report, but with the actual MRI films. I may be going out on a limb here, but by your use of the phrase " fall pregnant " , I'm guessing you're not in North America? If you are in Cananda or the US, an RE is *really* your best bet for getting someone with lots of experience with MAs. (Note, though, that not all REs are well-versed in MAs. In fact, some of them try NOT to deal with patients with MAs if they are also candidates for IVF or other assisted repro technologies, as the patients with MAs may skew their success rates down, and they are ALL about the success rates). If you're in the UK, or Australia, for example, I understand that their health care systems work quite a bit differently, so I can't really speak to those situations. But I have to imagine that they have specialists that are comparable to REs. > I have consulted with two family practitioners with rotations in obstetrics and gynecology. I am not trying to impugn the abilities of the family practitioners that you saw, but I want to point out that MAs are SO rare (relatively speaking) that even really good, capable, wonderful family practitioners generally do not see them enough to really be on top of them. Even really good, capable, wonderful *obgyns* typically don't see enough MAs on a regular basis to really be on top of them. I *know* that there are some terrific obgyns with exceptional surgical skills, and I don't want to discount them, but MAs are (again) so rare that I (personally) wouldn't want to be a " practice patient " for a doc that just doesn't see MAs on a regular basis. > I was also told > by this doctor that an RE was not necessary as I do not have a > hormonal problem. This is a very common misconception (no pun intended). Hormonal issues are only ONE of the things that REs take care of. Infertility issues are also only ONE of the things that REs take care of. Again, SOME REs focus only on hormonal/infertility issues, but not all of them. And by nature of their training, they are MUCH MORE LIKELY to see hundred of MA cases over the course of their careers, rather than maybe a few dozen at most. My old obgyn practice (that I had been with for 8 years) never had more than 5-8 MA patients in their practice at any given time. When I found out about my MA, I asked if I should have either of the founders of the practice (both of whom had been obgyns for 20+ years) take over my care, but between the two of them, and the THOUSANDS of patients that they come through their doors during that time, they had only seen (at most) a few dozen MA patients. My RE, on the other hand, devotes a *significant* portion of her practice to MA patients - including those that have no other hormonal/infertility issues, but that required diagnosis and surgical intervention. Also, I can tell you that in my process of trying to finding someone who could really tell me what was going on, I asked several other doctors about which type of specialist that I should see for diagnosis and possible treatment, and they ALL said that my best bet was to find a good RE - primarily because they would be the most well-informed and experienced (diagnostically and surgically) about the issue. > We have been trying for 17 cycles prior to the > results of the HSG. I'm so sorry that you've been trying for so long without success. By the way, there is quite a bit of evidence that HSGs actually INCREASE your chances of getting pg for the first 3 cycles after the procedure, by the way. The fact that you've been trying for so long may in and of itself be an indication that you should consider stepping things up to see an RE (again, just my opinion). I am *really* not trying to push you to do something you don't feel comfortable doing. I just want to encourage you to be an advocate for your own health, and that means finding the best doctor *for your own situation*. Hope this helps a bit, Ann __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Hi, Lois, welcome to our list. I'm sorry you had to join us, but you'll get good support here. I've already posted my newby letter to another newby today but maybe you didn't see it so I'll do it yet again. BTW, I've recently become a catmommy to an Older Cat. She's been coughing a lot so I took her to the vet and he after some blood tests and X-rays (and $400+ from me) told me she had asthma. So what can you do to treat cat asthma? He said steroids. Uh-uh, no way, I said...I know prolonged steroid use can cause diabetes (in both cats and people) and one diabetic in this family (me) is enough! So...she has her little coughing spells but she gets over them nicely. Speaking of which...are you all aware that you can post photos? I forget the exact process but, Rick, I have a nice new photo of me and my cat that would be fun to show you all. Can I send it to you offlist and you post it for me? Her name is Fluffy -- because she's a shorthaired cat, of course. Anyway, here's the newby letter: First of all, let me refer you to two of the best books about diabetes. Read 'em and you'll learn a lot: The first one is called " The First Year, Type Two Diabetes, An Essential Guide for the Newly Diagnosed " by Gretchen Becker. Gretchen is a list member and her book is an excellent guide. It's in paperback and available online from Amazon if your local bookstore doesn't have it. The second book is called " Dr. Bernstein's Diabetes Solutions " by K. Bernstein, M.D. You can get it from the library but it's such a good reference that you really should have it in your home library. Dr. Bernstein is a longtime type 1 who controls his diabetes using a lowcarb diet as well as insulin.. Many of us - both type 1 and 2 -- on this list have found great success using his plan or a modified version thereof. . And here's the URL to Dr. Bernstein's website, where there's lots of good stuff: http://www.diabetes-normalsugars.com/index.shtml These two books will give you good basic information on the ins and outs of diabetes management. I would further refer you to an excellent informational website titled " " What They Don't Tell You About Diabetes " http://www.geocities.com/lottadata4u/ If it isn't there for some reason, let me know and I can email you the contents -- I have it in my archives now. I would also refer you to Mendosa's website, where there's a wealth of diabetic information and good links. He also has an online diabetes newsletter which is very good. It's also an excellent source for information about the GI index (glycemic index). www.mendosa.com There's one thing that's sure to make BGs rise and that's carbohydrates. Cutting out high GI carbs is an excellent way to control your BGs and the more you cut, the better. Most of us find that the " whites " -- breads, cereals and pastas, in fact anything made with grain - will raise our BGs. Also, rice and potatoes will do the same. And of course, cakes and cookies and sweets of all kinds, including fruits and fruit juices. Watch out for " low calorie " foods; often they're higher in carbs. Learn to read food labels. Dr. Bernstein recommends about 40 carbs a day total. This is really only for the dedictated low carber and IMHO hard to maintain over the long run. However, I've read that the average American eats about 300 carbs a day, so the truth is somewhere in between. The best thing you can do for yourself (if you haven't already) is buy a meter and use it FREQUENTLY. At the beginning you want to learn how different foods affect your BG and to do this you need to eat one food at a time, testing first...then test one and two hours afterwards. Weigh out the amounts and keep good notes. You'll use up a lot of strips in the beginning but the rewards are definitely worth the expense and bother because in the end, you'll know what foods to avoid and which are okay. Diabetes is a very individual disease and we often say YMMV - " your mileage may vary " -- what works for one may not work for another. You want to aim for postprandial (two hours after meal) BG of 120. Keeping your BGs between 70 and 140 are your goals. If you can do this longterm, you can probably avoid the dreaded consequences of longterm poor BG control...and I'm sure I don't have to list those for you. (I will if you want, though). Here's my own list of pretty lowcarb veggies: Spinach Cauliflower Broccoli Summer squash (zucchini, crookneck) Spaghetti squash Mushrooms Asparagus Greenbeans Cabbage Sauerkraut And of course lettuce and avocados which aren't a veggie but a fruit .but they're definitely lowcarb. I have a large mixed lettuce salad with avocado every night with dinner. You can eat a reasonable portion (4-6 ounces) of meat, chicken, fish without problem; it's all protein, no carbs. Berries are the lowest carb fruit but even so, you should eat them very sparingly. Here's the website of the USDA, which you'll find very helpful. It has carbs, calories, protein, etc. http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl It's helpful to have a food scale. A cup measure isn't nearly so accurate. I use a Salter scale. It weighs in both grams and ounces and cost me somewhere around $35. I got mine at a local gourmet shop but they're available online too. Just do a Google search for " Salter food scales " . The A1C is a test that measures your average BG for a three-month period with slightly more weight given to the latest month. All diabetics should have this test every three months. And you should ask for, and keep, copies of all your lab reports. Oh, here's a link to a site that explains some definitions of diabetic terminology: http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/P/Pancreas.html Good luck. And keep those questions coming. There's a really steep learning curve at the beginning of your diabetes education but hang in there -- it will all make sense eventually. And remember -- the only stupid question is the one you didn't ask. Vicki, diabetic since 1997, A1Cs consistently under 6 for a long time, no complications, planning on forever no complications, smile. New Member > Hello, my name is Lois. > > I am Type 2 Diabetic and was diagnosed about two months ago. > Currently, I > am taking 500 mg Metformin morning and night plus Crestor for high > cholesterol. My biggest challenge right now is getting my weight > down and > incorporating regular exercise into my daily routine. > > I am the second diabetic in the family. Our 18-year-old family cat > was > diagnosed in early 2001. Since then, I have been injecting him with > eight > units of Ultralente in the morning and seven at night. He is healthy, > happy and will hopefully live for several more years. :-) > > I am looking forward to learning all I can from all the folks on this > list. > > Blessings, > Lois. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 > > Hello, my name is Lois. > > I am Type 2 Diabetic and was diagnosed about two months ago. Currently, I > am taking 500 mg Metformin morning and night plus Crestor for high > cholesterol. My biggest challenge right now is getting my weight down and > incorporating regular exercise into my daily routine. > > I am the second diabetic in the family. Our 18-year-old family cat was > diagnosed in early 2001. Since then, I have been injecting him with eight > units of Ultralente in the morning and seven at night. He is healthy, > happy and will hopefully live for several more years. :-) > > I am looking forward to learning all I can from all the folks on this list. > > Blessings, > Lois. > Lois......... UltraLente was discontinued earlier this year and stocks of it should be out of stock about now what will you give your cat when the ultralente is gone? kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Mollie, Welcome to our group. Its not a easy road that we all have to travel and its not easy for the people around us either. But its not the end of the world either, I've often looked at others with a devastating disease and I tell myself " well girl you are lucky NOT be in their shoes. " My son in laws father has had a terrible year and a half with a brain tumor and it looks like he is not going to be with us much longer. Surgery's and chemo are not a pleasant thing to go though. PLS is not fun either but its not life threading just life changing. We learn to adapt, its not always easily done. The looks and the stares for me were the hardiest to overlook, but I've done it. It doesn't even bother me anymore. I find that people can be helpful opening doors or getting out of my way while I barrel down a shopping aisle. I just feel like I'd do the same for someone else needing help. So I just except their kindness on my bumpy road. I also have a wonderful husband who through the years has made my life easier. It sounds like you do to and that's great. Stay postive and don't let stress get to you. Each of us are different in how we progress. Some of us progress fast others slower and for some we seem to level off and remain the same for the most part. As we age it can be more difficult too. Aging sucks to and I don't care for it at all. I've had PLS since 1991 at the age of 45 starting with my voice and for 5 years that's all I had. After falling and breaking my wrist PLS really kicked in and in two years I went from a cane to a four wheel walker and then leveled off. All I can tell you is try to do what you can and allow your love ones to do what you can't. Again welcome, Flora/Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Hi Mollie, And unfortunately welcome to this site. I am 48 and my symptoms began almost 11 years ago in my left leg but it was when i was 42 that I had to use a cane to help me walk unassisted. Now I use a walker with wheels outside the home. My speech is affected also. I have been stable for the past 6 years. Its very hard at first to come to grips with the fact when you learn you have a neurological illness but as time goes on you accept it and get on with your life. You will have your down days but its a case of 2 well known sayings and they are:- Sink or swim When life deals you lemons you make lemonade. I agree that you are fortunate (if you had to have an illness) that you got PLS when you are 55 and its good that you think that way. I was way too young and would think the same as you if I were just getting PLS at 55. So you have a good attitude already. Keep it up! It sure is a strange coincidence that your sister-in-law got ALS. I have a friend who has MS and her daughter and mine were good friends in primary school and we always mention how strange it was that we both came down with neurological disorders. However she is worse of than me. When I was in my early 30's, I met a man in his 60's who had ALS. He was walking around and talking but was wearing a neck brace. His daughter told me that he had ALS and I was horrified that this man could be acting so happy and how could he cope with such a devastating disease. And then a decade later, I end up with a motor neurone disorder also??? I find that really weird. This is a great site, as you know. And I couldnt live without the good people here. You will cope Mollie. Try and stay positive. Maureen (Australia) > > Hi, I'm Mollie from Texas and I was diagnosed with PLS in June and > confirmed in Oct. My daughter-in-law contacted your group after we > all spent Thanksgiving together and she was concerned about how my > family and I were handling the dx. Not very well, I'm afraid. > > My first symptom was just one slurred word in May 2004 and I thought > how funny I can't say that word. Within a month or two I had my first > bout of " imbalance " - I later told a dr. it was like my center of > gravity was off. Around that same time, while I was on my 3 mile > daily walk, I noticed my left foot just didn't lift up quite right, > but if I thought about it, I could make it work OK. Since then, > things have just gone downhill, and it seems the progression has sped > up in the last 6 months. Maybe that's because I quit working in July > and didn't have to pretend everything was OK. I was really tired. > > I've been reading your messages for a while now and am amazed at the > positive attitudes you have, and how courageous you are. I don't feel > that way at all. I am grateful, however, that I made it to 55 yrs. in > really great health and I got to stay at home to raise my kids. I > have a loving husband who is as baffled by this disease as I am and > he is really struggling to accept it. He traveled a lot as our sons > were growing up and I took care of everything - now I can't even make > a phone call and be understood. > > I think one of the worst things is that my sister-in-law died of ALS > about 5 years ago. How can 2 brothers marry 2 unrelated women from > different parts of the country and they both end up with a rare MND? > We lived quite a distance from them and only saw them yearly, but > watching the progression of ALS was terrible. My sister-in-law was on > a ventilator for years and totally immobile as far as I could tell, > and at the time I thought she was selfish to keep hanging on and > putting her family through the horror of ALS. Now I know she was the > most courageous person I've known. > > I go back to Dallas to see my neurologist week after next and I'm > open to any questions I should ask. I'm on only one med, 10 mg. > baclofen, which seems to help some if I've gotten good rest and > feeling pretty well. If I'm tired it doesn't seem to help at all. My > daughter-in-law, Hope, put together a binder with lots of great > information in it and I am doing some speech and stretching exercises > she included. I would appreciate any suggestions you might have. > > Take good care, > Mollie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi Mollie, Where do you live in Texas. I live in Longview. Getting a light mist right now. First moisture we have had in two months. Sorry you are having the familiar symptons. My foot scuffing on the floor and trouble initiating walking were two of my early symptons. People complained of slurring but I thought it was the meds. Was diagnosed early on with Stiffman Syndrome and diazapam was the treatment of choice. I went to a Dr. Dewey at Southwest Schl of Medicine, Univ of Texas, first diagnosis, who said Parkinson, heavy doses of Mirapex, after 3 months and worse said not Parkinson. First diagnosis from local neuro: Isolated Gait Ignition Failure (it really exists, he gave me a copy out of his textbook). Second: Parkinson, Third: Stiffman Syndrom (for yr and half by the best Baylor in Houston had), Fourth: Primary Lateral Sclerosis or Multiple System Atrophy, Fifth: PLS. I hope that is that, but going to have my primary dr. check for Lyme's Disease. Seems like some symptons come then leave never to return again and things kinda settle down. Stay on board, there are people here that can answer just about any thing. From the Lone Star State, Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi Mollie, i am new to the group too and posted for the first time last wk. i was just diagnosed in december and my speech is also severely affected as is mobility/walking (AFOs, cane, and sometimes walker). i'm 38 w/2 kids. one thing that has helped me is back in the spring i started working w/a yoga teacher who has some experience w/folks w/physical challenges. we do mostly very low-key yoga poses/stretches on the floor and i am able to do a series of poses on my own as well. we even do some balance poses against the wall. the yoga breathing exercises help as well. my neurologist, who is at duke, and the PT there both said they thought yoga was one of most effective exercises/relaxation approaches for people w/chronic neuro issues. i wish there was yoga for my speech but we haven't found that yet . this may not work for everyone but the yoga has definitely been helpful both mentally and physically, esp. in working with stiffness/spasms/pain. anyway, i sympathize w/you very much. i'm also taking baclofen (40 mg/day), which has really, REALLY helped, as well as zoloft, which has helped a lot too. like you, i've been having a hard time dealing with this. i ran marathons before this all started in the spring of '04. but i feel like i'm making progress and like this forum is a God-send. sarah --- mollieinman mollieinman@...> wrote: > Hi, I'm Mollie from Texas and I was diagnosed with > PLS in June and > confirmed in Oct. My daughter-in-law contacted your > group after we > all spent Thanksgiving together and she was > concerned about how my > family and I were handling the dx. Not very well, > I'm afraid. > > My first symptom was just one slurred word in May > 2004 and I thought > how funny I can't say that word. Within a month or > two I had my first > bout of " imbalance " - I later told a dr. it was like > my center of > gravity was off. Around that same time, while I was > on my 3 mile > daily walk, I noticed my left foot just didn't lift > up quite right, > but if I thought about it, I could make it work OK. > Since then, > things have just gone downhill, and it seems the > progression has sped > up in the last 6 months. Maybe that's because I quit > working in July > and didn't have to pretend everything was OK. I was > really tired. > > I've been reading your messages for a while now and > am amazed at the > positive attitudes you have, and how courageous you > are. I don't feel > that way at all. I am grateful, however, that I made > it to 55 yrs. in > really great health and I got to stay at home to > raise my kids. I > have a loving husband who is as baffled by this > disease as I am and > he is really struggling to accept it. He traveled a > lot as our sons > were growing up and I took care of everything - now > I can't even make > a phone call and be understood. > > I think one of the worst things is that my > sister-in-law died of ALS > about 5 years ago. How can 2 brothers marry 2 > unrelated women from > different parts of the country and they both end up > with a rare MND? > We lived quite a distance from them and only saw > them yearly, but > watching the progression of ALS was terrible. My > sister-in-law was on > a ventilator for years and totally immobile as far > as I could tell, > and at the time I thought she was selfish to keep > hanging on and > putting her family through the horror of ALS. Now I > know she was the > most courageous person I've known. > > I go back to Dallas to see my neurologist week after > next and I'm > open to any questions I should ask. I'm on only one > med, 10 mg. > baclofen, which seems to help some if I've gotten > good rest and > feeling pretty well. If I'm tired it doesn't seem to > help at all. My > daughter-in-law, Hope, put together a binder with > lots of great > information in it and I am doing some speech and > stretching exercises > she included. I would appreciate any suggestions you > might have. > > Take good care, > Mollie > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Arlene, We live on South Padre Island now (moved here in July from Rotan, Tx, about 200 miles west of Dallas) but my mom lives in Marshall. It sounds like you have been through just about every diagnosis there is. I understand Lyme's disease can be treated (cured?). Good luck with that test. Thanks for replying. Mollie --- riddlea@... wrote: > Hi Mollie, > > Where do you live in Texas. I live in Longview. > Getting a light mist right now. First moisture we > have had in two > months. > > Sorry you are having the familiar symptons. My foot > scuffing on the > floor and trouble initiating walking were two of my > early symptons. > People complained of slurring but I thought it was > the meds. Was > diagnosed early on with Stiffman Syndrome and > diazapam was the > treatment of choice. > > I went to a Dr. Dewey at Southwest Schl of Medicine, > Univ of Texas, > first diagnosis, who said Parkinson, heavy doses of > Mirapex, after 3 > months and worse said not Parkinson. > First diagnosis from local neuro: Isolated Gait > Ignition Failure (it > really exists, he gave me a copy out of his > textbook). Second: > Parkinson, Third: Stiffman Syndrom (for yr and half > by the best Baylor > in Houston had), Fourth: Primary Lateral Sclerosis > or Multiple System > Atrophy, Fifth: PLS. I hope that is that, but > going to have my primary > dr. check for Lyme's Disease. > > Seems like some symptons come then leave never to > return again and > things kinda settle down. > > Stay on board, there are people here that can answer > just about any > thing. > > From the Lone Star State, > > Arlene > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi , Thanks for the suggestion about yoga. I do some stretches on my own, but have not had physical therapy yet. I admire your gumption - you seem to be moving forward and handling this PLS very well. I know it can't be easy with young kids. My husband is from Wilmington, NC and went to Wake Forest in Winston-Salem. Our younger son is still at Wake and we were in the area for several days around Christmas. It is beautiful there but I do love the wide open spaces in Texas (my home state). Thanks for replying. Mollie --- -Witt srwitt@...> wrote: > Hi Mollie, > > i am new to the group too and posted for the first > time last wk. i was just diagnosed in december and > my > speech is also severely affected as is > mobility/walking (AFOs, cane, and sometimes walker). > i'm 38 w/2 kids. > > one thing that has helped me is back in the spring i > started working w/a yoga teacher who has some > experience w/folks w/physical challenges. we do > mostly > very low-key yoga poses/stretches on the floor and i > am able to do a series of poses on my own as well. > we > even do some balance poses against the wall. the > yoga > breathing exercises help as well. my neurologist, > who > is at duke, and the PT there both said they thought > yoga was one of most effective exercises/relaxation > approaches for people w/chronic neuro issues. i wish > there was yoga for my speech but we haven't found > that > yet . > > this may not work for everyone but the yoga has > definitely been helpful both mentally and > physically, > esp. in working with stiffness/spasms/pain. > > anyway, i sympathize w/you very much. i'm also > taking > baclofen (40 mg/day), which has really, REALLY > helped, > as well as zoloft, which has helped a lot too. like > you, i've been having a hard time dealing with this. > i > ran marathons before this all started in the spring > of > '04. but i feel like i'm making progress and like > this > forum is a God-send. > > sarah > --- mollieinman mollieinman@...> wrote: > > > Hi, I'm Mollie from Texas and I was diagnosed with > > PLS in June and > > confirmed in Oct. My daughter-in-law contacted > your > > group after we > > all spent Thanksgiving together and she was > > concerned about how my > > family and I were handling the dx. Not very well, > > I'm afraid. > > > > My first symptom was just one slurred word in May > > 2004 and I thought > > how funny I can't say that word. Within a month or > > two I had my first > > bout of " imbalance " - I later told a dr. it was > like > > my center of > > gravity was off. Around that same time, while I > was > > on my 3 mile > > daily walk, I noticed my left foot just didn't > lift > > up quite right, > > but if I thought about it, I could make it work > OK. > > Since then, > > things have just gone downhill, and it seems the > > progression has sped > > up in the last 6 months. Maybe that's because I > quit > > working in July > > and didn't have to pretend everything was OK. I > was > > really tired. > > > > I've been reading your messages for a while now > and > > am amazed at the > > positive attitudes you have, and how courageous > you > > are. I don't feel > > that way at all. I am grateful, however, that I > made > > it to 55 yrs. in > > really great health and I got to stay at home to > > raise my kids. I > > have a loving husband who is as baffled by this > > disease as I am and > > he is really struggling to accept it. He traveled > a > > lot as our sons > > were growing up and I took care of everything - > now > > I can't even make > > a phone call and be understood. > > > > I think one of the worst things is that my > > sister-in-law died of ALS > > about 5 years ago. How can 2 brothers marry 2 > > unrelated women from > > different parts of the country and they both end > up > > with a rare MND? > > We lived quite a distance from them and only saw > > them yearly, but > > watching the progression of ALS was terrible. My > > sister-in-law was on > > a ventilator for years and totally immobile as far > > as I could tell, > > and at the time I thought she was selfish to keep > > hanging on and > > putting her family through the horror of ALS. Now > I > > know she was the > > most courageous person I've known. > > > > I go back to Dallas to see my neurologist week > after > > next and I'm > > open to any questions I should ask. I'm on only > one > > med, 10 mg. > > baclofen, which seems to help some if I've gotten > > good rest and > > feeling pretty well. If I'm tired it doesn't seem > to > > help at all. My > > daughter-in-law, Hope, put together a binder with > > lots of great > > information in it and I am doing some speech and > > stretching exercises > > she included. I would appreciate any suggestions > you > > might have. > > > > Take good care, > > Mollie > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Hey Mollie, that is so cool! several of my family members went to wake forest, and my mother grew up there in winston-salem. i went to davidson, which is down near charlotte, and we live in raleigh now. i've only been to austin, tx, but would love to see more of it. also, i forgot to put one resource in re:yoga that might be useful. there's a book i have used some called " Recovery Yoga " by sam dworkis; you can get it at amazon or your library may have it. mr dworkis developed a severe form of MS in his mid-40s after years as a globe-trotting yoga teacher and as a result wrote this book for those struggling w/chronic illness or injury. it's cool because he focuses on stretches you can do sitting in a chair, leaning on a chair, as well as some good breathing techniques. bye mollie! i hope you have a good day. sarah --- Mollie Inman mollieinman@...> wrote: > Hi , > > Thanks for the suggestion about yoga. I do some > stretches on my own, but have not had physical > therapy > yet. I admire your gumption - you seem to be moving > forward and handling this PLS very well. I know it > can't be easy with young kids. > > My husband is from Wilmington, NC and went to Wake > Forest in Winston-Salem. Our younger son is still at > Wake and we were in the area for several days around > Christmas. It is beautiful there but I do love the > wide open spaces in Texas (my home state). > > Thanks for replying. > Mollie > > --- -Witt srwitt@...> wrote: > > > Hi Mollie, > > > > i am new to the group too and posted for the first > > time last wk. i was just diagnosed in december and > > my > > speech is also severely affected as is > > mobility/walking (AFOs, cane, and sometimes > walker). > > i'm 38 w/2 kids. > > > > one thing that has helped me is back in the spring > i > > started working w/a yoga teacher who has some > > experience w/folks w/physical challenges. we do > > mostly > > very low-key yoga poses/stretches on the floor and > i > > am able to do a series of poses on my own as well. > > we > > even do some balance poses against the wall. the > > yoga > > breathing exercises help as well. my neurologist, > > who > > is at duke, and the PT there both said they > thought > > yoga was one of most effective > exercises/relaxation > > approaches for people w/chronic neuro issues. i > wish > > there was yoga for my speech but we haven't found > > that > > yet . > > > > this may not work for everyone but the yoga has > > definitely been helpful both mentally and > > physically, > > esp. in working with stiffness/spasms/pain. > > > > anyway, i sympathize w/you very much. i'm also > > taking > > baclofen (40 mg/day), which has really, REALLY > > helped, > > as well as zoloft, which has helped a lot too. > like > > you, i've been having a hard time dealing with > this. > > i > > ran marathons before this all started in the > spring > > of > > '04. but i feel like i'm making progress and like > > this > > forum is a God-send. > > > > sarah > > --- mollieinman mollieinman@...> wrote: > > > > > Hi, I'm Mollie from Texas and I was diagnosed > with > > > PLS in June and > > > confirmed in Oct. My daughter-in-law contacted > > your > > > group after we > > > all spent Thanksgiving together and she was > > > concerned about how my > > > family and I were handling the dx. Not very > well, > > > I'm afraid. > > > > > > My first symptom was just one slurred word in > May > > > 2004 and I thought > > > how funny I can't say that word. Within a month > or > > > two I had my first > > > bout of " imbalance " - I later told a dr. it was > > like > > > my center of > > > gravity was off. Around that same time, while I > > was > > > on my 3 mile > > > daily walk, I noticed my left foot just didn't > > lift > > > up quite right, > > > but if I thought about it, I could make it work > > OK. > > > Since then, > > > things have just gone downhill, and it seems the > > > progression has sped > > > up in the last 6 months. Maybe that's because I > > quit > > > working in July > > > and didn't have to pretend everything was OK. I > > was > > > really tired. > > > > > > I've been reading your messages for a while now > > and > > > am amazed at the > > > positive attitudes you have, and how courageous > > you > > > are. I don't feel > > > that way at all. I am grateful, however, that I > > made > > > it to 55 yrs. in > > > really great health and I got to stay at home to > > > raise my kids. I > > > have a loving husband who is as baffled by this > > > disease as I am and > > > he is really struggling to accept it. He > traveled > > a > > > lot as our sons > > > were growing up and I took care of everything - > > now > > > I can't even make > > > a phone call and be understood. > > > > > > I think one of the worst things is that my > > > sister-in-law died of ALS > > > about 5 years ago. How can 2 brothers marry 2 > > > unrelated women from > > > different parts of the country and they both end > > up > > > with a rare MND? > > > We lived quite a distance from them and only saw > > > them yearly, but > > > watching the progression of ALS was terrible. My > > > sister-in-law was on > > > a ventilator for years and totally immobile as > far > > > as I could tell, > > > and at the time I thought she was selfish to > keep > > > hanging on and > > > putting her family through the horror of ALS. > Now > > I > > > know she was the > > > most courageous person I've known. > > > > > > I go back to Dallas to see my neurologist week > > after > > > next and I'm > > > open to any questions I should ask. I'm on only > > one > > > med, 10 mg. > > > baclofen, which seems to help some if I've > gotten > > > good rest and > > > feeling pretty well. If I'm tired it doesn't > seem > > to > > > help at all. My > > > daughter-in-law, Hope, put together a binder > with > > > lots of great > > > information in it and I am doing some speech and > > > stretching exercises > > > she included. I would appreciate any suggestions > > you > > > might have. > > > > > > Take good care, > > > Mollie > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Hi! I joined a few months ago while reading the same book. My daughter is 22 and struggling to get through college and on with life. She was diagnosed a year before, but we all really weren't ready to hear it then. Now we are getting help and looking for the rainbow or even the light at the end of the tunnel. Is your daughter getting help or taking medication? Keep in touch with this mailing list to meet wonderful people who have been through lots and lots of terrible stuff but are managing to keep their sanity. Quite a few have grandchildren, like you, and are doing their best to take care of themselves, their daughters, and their grandchildren. Once the weekend is over, I'm sure you'll be hearing from some of them. Remember! You've got to take care of yourself first! Your health and your well-being are as important as anyone else's! Best regards, Deborah --- bornonsat bornonsat@...> wrote: > Hi there, > > I just found out about this group when reading the > book " Stop Walking > on Eggshells " . My daughter is 36 years old and has > been diagnosed > with BPD. She was in a verbally abusive marriage > but left her husband > about a year ago. Since then it has been awful. A > custody battle over > her 2 children is ongoing and has been quite > stressful. Over the > years it has been quite taxing and has cost me quite > a bit finacially > and emotionally. I see myself so often as I read > through the book. > Good to see a support group online. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Dear Bomons Is it your daughter who was the verbally abusive one in the marriage? How is she with you and the children? Yes, many of us here have grandchildren we are trying to protect from our daughters' poor life choices. You will definitely find this group a strong support. I don't know what I would have done without it. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 In a message dated 1/28/2006 10:58:30 PM Eastern Standard Time, bornonsat@... writes: Good to see a support group online. Hello there and welcome to our group. I take it your daughter doesn't live w/you? Do you at least get to see your grands? I hope so, they need the structure and support that you can provide. At least your daughter was smart enough to get out of the bad relationship, and hopefully won't tend to get her self involved in another one. They do seem to seek out those types that are bad for them. Hopefully you are maintaining a life for yourself, not enabling your daughter, not letting her be co-dependent on you. I know it's difficult not to run and rescue them from the situations they get themselves into, but hang in there. She is an adult and I'm glad for you that you have found our site and are educating yourself about this disorder. DebbieL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 , Did you go through Kaiser? I am post op from Kaiser South San Francisco...My surgery was on 4/20....Welcome to the group Mike T New Member > Hello all, > > My name is . I live in Sacramento California. I'm post op > laprascopic gastric bypass 10/17/06. I've currently lost 40 lbs to > date. I'm very excited about joining the group. Looking forward to > chatting, exchanging ideas and personal concerns with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Hi . Welcome to the group! Hugs, in Texas " A. " wonderwoman3370@...> wrote: Hello all, My name is . I live in Sacramento California. I'm post op laprascopic gastric bypass 10/17/06. I've currently lost 40 lbs to date. I'm very excited about joining the group. Looking forward to chatting, exchanging ideas and personal concerns with you. --------------------------------- Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. --------------------------------- Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2006 Report Share Posted December 19, 2006 Hi and welcome to the group. I hope that you will find us fun and informative. I hope that your weight loss here will be as successful as many of ours has been and will be as life changing. Lin 422-338-250 Lhsh@... American by birth, Saved by the grace of God. New Member 1. Name: Bernard 2. City and state: Lake Worth, FL 3. Are you a Southern California resident? no 4. Would you like to be added to our in person luncheon guest list? no 3. Email address: heatherelectra@... 4. Obesity Help Profile name and/or OH URL: hbernard 5. Are you: Considering Surgery, Pre Op or Post Op: Post Op 6. Date of WLS: 12/7/2006 7. Surgeon’s Name: Wizman MD 8. Type of Surgery: bypass 9. Highest Pre Surgery Weight: 265 10. Insurance or self pay: Insurance 11. What is the name of your insurance company that covered your WLS: United Health Care 12.Birthdate: 2/11 13.Occupation: computer programmer 14.Hobbies: beading, computer games, playing with my fur-family (4 dogs, 2 cats) 15.Anything you would like the other members to know about you? -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.432 / Virus Database: 268.15.24/592 - Release Date: 12/18/2006 1:45 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Yeah another !!!!! Welcome to the group!!! Hugs!! O. > > > > 1. Name: Bernard > > > > 2. City and state: Lake Worth, FL > > > > 3. Are you a Southern California resident? no > > > > 4. Would you like to be added to our in person luncheon guest list? no > > > > 3. Email address: heatherelectra@... > > > > 4. Obesity Help Profile name and/or OH URL: hbernard > > > > 5. Are you: Considering Surgery, Pre Op or Post Op: Post Op > > > > 6. Date of WLS: 12/7/2006 > > > > 7. Surgeon's Name: Wizman MD > > > > 8. Type of Surgery: bypass > > > > 9. Highest Pre Surgery Weight: 265 > > > > 10. Insurance or self pay: Insurance > > > > 11. What is the name of your insurance company that covered your WLS: > United Health Care > > > > 12.Birthdate: 2/11 > > > > 13.Occupation: computer programmer > > > > 14.Hobbies: beading, computer games, playing with my fur-family (4 dogs, 2 > cats) > > > > 15.Anything you would like the other members to know about you? > > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.5.432 / Virus Database: 268.15.24/592 - Release Date: 12/18/2006 > 1:45 PM > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Hmm. Two s at the same time? I think I rented a movie like that once. NICE! Mike in GR > > > > > > > > 1. Name: Bernard > > > > > > > > 2. City and state: Lake Worth, FL > > > > > > > > 3. Are you a Southern California resident? no > > > > > > > > 4. Would you like to be added to our in person luncheon guest > list? no > > > > > > > > 3. Email address: heatherelectra@ > > > > > > > > 4. Obesity Help Profile name and/or OH URL: hbernard > > > > > > > > 5. Are you: Considering Surgery, Pre Op or Post Op: Post Op > > > > > > > > 6. Date of WLS: 12/7/2006 > > > > > > > > 7. Surgeon's Name: Wizman MD > > > > > > > > 8. Type of Surgery: bypass > > > > > > > > 9. Highest Pre Surgery Weight: 265 > > > > > > > > 10. Insurance or self pay: Insurance > > > > > > > > 11. What is the name of your insurance company that covered your > WLS: > > United Health Care > > > > > > > > 12.Birthdate: 2/11 > > > > > > > > 13.Occupation: computer programmer > > > > > > > > 14.Hobbies: beading, computer games, playing with my fur-family (4 > dogs, 2 > > cats) > > > > > > > > 15.Anything you would like the other members to know about you? > > > > > > > > > > -- > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.5.432 / Virus Database: 268.15.24/592 - Release Date: > 12/18/2006 > > 1:45 PM > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Hi . My son Luke is 2 1/2. He had Choanal Atresia and still has a G-tube due to swallowing problems. He had kidney reflux for his first year, but fortunately it resolved on it's own. He has some kind of spot on his kidney but no one has ever been able to tell us what it us, but his kidney function is good so I try not to worry about it. Luke just had tubes put in his ears to relieve the fluid and recurring ear infections. We are still unsure of his hearing as well. He passed an ABR but I still have my doubts that his hearing is " normal " . Luke is definitely more delayed in the area of gross motor than your son. He is just now starting to pull himself up on furniture. I can totally relate about doctors only looking at your child in sections. We have had the same problem. We just recently got Luke into a program called U Special Kids. The program is for chronically ill children to help coordinate their care and keep them at home and out of the hospital as much as possible. He sees a pediatrician who looks at the whole picture now and she also focuses a lot on treating nutritional problems instead of meds for everything. Maybe there is a program like that where you live? Luke had to be approved for it, but that wasn't a problem. They also make sure that when your child goes under anestesia for a procedure, that's when things like blood draws are taken and the dental exams are done also. They try to do what's in the best interest of your child instead of what's convenient for doctors. I'll try to remember to ask my doctor next time I talk to her if they know of any programs like this in Florida. Anyway, welcome to the group. You can check out Luke's website if you want. It's http://www.caringbridge.org/mn/lukejoseph and Luke > Hello Everyone > > I have just joined this group. I live down in Florida on the West > Coast side. My son, who just turned one was diagnosed with Charge at 5 > months. He has fluid in ears and abnormalities of the cocolear. We > are still in the process of finding what kind of hear impairment he > has. I know he can hear but it is how he hears it. He has the coaneal > atrisia, g-tube, and a small kidney due to reflux. I apologize with my > spelling. We have recently started talikng with Dr Nurko and will be > visiting him soon. His gross motor skills are not to delayed. He just > started crawling and pulling him self up on furniture. He loves to > walk with my assistance. My biggest battle with dealing with Charge is > the doctors are not fully aware of it. They are educating themselves > as I am. Also, trying to have a doctor help with coordinating his > care. Everyone looks at him in sections, nobody looks at him as a > whole person. That is truly frustrating. If anyone has any > suggestions on how to make it easier, let me know > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 > > , > Welcome to the list - you will find some useful advice and info here and always an understanding shoulder. I can't wait to hear more about your son - what is his name? Kennedy's Mom www.chargesyndrome.info . > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 heather welcom im wat we in here call a charger im 21 but in one month exactly ill b 22 i dont have tha artresia but ive had cleft lip palate and im fed thourgh a gtube ive got ear porbs and colabomas in the eyes they ears just got checked today ive got a sencory neural plus bone conduction hearing loss im in the mild to moderate range woth that but can hear quite good with hearing aids ive been in and out of hosp many times for my tummy and other stuff this group is great for anyone and everyone here as jeanie said the first few years r the hardest but it can get easier im from aus hugs ellen > > > > > , > > > > Welcome to the list - you will find some useful advice and info here and > always an understanding shoulder. I can't wait to hear more about your son > - what is his name? > > > Kennedy's Mom > www.chargesyndrome.info > > . > > > > > > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 you need to have Aldosterone and Renin tested as well as saliva cortilsl. The saliva testing you can order yourself from www.canaryclub.org and the Aldfosteone & Renin your doctor can most liekly order but if they won't go to our LINKS section at the mauin website for this group and look under labs. The first oe will test both but you have to call them to ask for the Renin testing. These have everything to do with poitassium levels The Beta Blocker will lower your thyroid levels further. I strongly urge you to find a doctor in or out of insurance that will treat you wiht natural thyroid. Your body needs it especaiall y pot thyroidectomy. (PS we don;t worry abotu typos here as I am the WORST!) -- Artistic Grooming- Hurricane WV http://www.stopthethyroidmadness.com/ http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ http://health.groups.yahoo.com/group/RT3_T3/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Hi Phyllis. My name is Sharon. I've had FMS for about 7 years and have had Juvenile Rheumatoid Arthritis for about 18 years. I'm 29 and I've been on disability for about 7 years. I applied and got on Social Security Disability for my JRA but you can get on for FMS also. All you need is a good doctor to fill out the paper work certifying you as qualifying for disability. I'd try to do it yourself the first time then if you get denied try a lawyer. i did it by myself and didn't have to pay the attorney fees. It only took me about 9 months to get on. You don't have had to have worked. It's called " Social Security Supplimental Income " . You don't get as much as you would if you had worked but something is better than nothing. And after I got on SSI they switched me over to a type of disability called Adult Disabled Child. Since I have been disabled since befoe my 22 birthday, I was able to file under my dad's social security and I was able to get Medicare. Oh and on SSI you may qualify for Medicaid. If you are legally married maybe not. Let me know. I know quite a few tricks to the trade so to speak. Please email me or IM me if you would like to talk. Hope I've helped....Sharon. new member Hi everyone, I am new to this group and was diagnosed with FMS 4 years ago. However, the past 6 months have been the worst ever. My hips and legs are in severe pain and anytime I hold my 11 month old nephew (who is very tiny) my right arm ends up hurting severely for weeks. I have also recently started having severe migraines that last up to a week. It has not been fun. I also have 2 autistic boys and a husband that is very unsupportive and not only unhelpful, but he pretty much makes everything worse. My stress level is through the roof. I went to see a new rheumatologist this week and he started asking me about my childhood and my marriage and said I was depressed and prescribed Trazidone. I asked about Lyrica and he pretty much shook his head and said that only helps with the pain and wouldnt prescrib it. He pretty much gave me nothing for the pain, just said that if I get some sleep with the trazadone the pain will get better. His resident suggested possibly water therapy but he shot that down too saying try the trazadone first. I was able to get a handicapp parking sticker, but can not apply for disability. For the past 13 years I have been a stay at home mom, doing odd jobs from home (in home daycare for most of the time and selling avon). None of it comes close to helping with the bills (especially with two autistic kids) but working outside the home is impossible for me. The number one reason I am stuck in my marriage is I have no way to support myself and the kids (even with support from him). I am mostly just looking for a supportive group to discuss and vent with. Phyllis ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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