Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 I would suggest you trying to get pregnant prior to doing any surgery. Many women can conceive and carry almost to full term w/their fibroids. The reason I say this is because I, myself am afraid of any surgery that may scar my uterine lining or ruin my chances of having children. I'm 25 yrs old and I have 3 fibroids in " mickey mouse " location as well. Two are 4cm and 1 is 6cm (that's what they said in November, I'm larger now). Just listen to what the other women have to say. They are very supportive here and give out great information. I just became a member two days ago and I feel so much better. Good luck and keep me/us posted, since you are the first woman I've found that is a mirror image of my fibroids and developed them at the same age. Shaunah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 I am also a 27 year old with fibroids, and ironically enough they found out that I had fibroids the same eime that you learned you did too. I have one child, and things are okay. I also recommend not having any kind of surgery till after you find out if you can concieve or not. I went to a fertility specialist and he told me that most times the scarring from the surgey itself is worse on your fertility then the fibroids are. -Buffy in South Carolina jhera_b wrote: Hello everyone! I recently found your group and I am very happy to be joining you all. I am 27 years old and was diagnosed with fibroids October 2001 when I was 25 years old. I have 3 fibroids in the shape of " mickey mouse " that sit at the top of my uterus and they are the size of a 4 month pregnancy. I have no children and will be hoping to conceive at the end of this year. I did not use to have symptoms but now I have frequent trips to the bathroom, feeling of fullness, and painful sex. It does not occur all the time but I know that they are there. My last exam in November'03 revealed by ultrasound that they have not grown very much but my symptoms warrant surgery....abdominal myomectomy. I have a second opinion at the end of this month because I do not know what to do. They are too big to attempt laparoscopic so that choice is out. I was wondering if I could chance it and just try to get pregnant with the fibroids in or would it be better to have them removed? I get mixed responses so I was wondering if women who are dealing with my issues could offer me some advice. I live in Columbus Ohio and I have only found one physician that does UAE but that extreme pain afterwards is not very appealling to me. Any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 New Member Hi, my name is Tia and I'm an EDSer Type III, too. I'm also one of the newest members in the list (only a month) and I welcome you to your new family! I just wanted to say, as a newcomer that I feel unbelievable fortunate to have found this group and so should you!!! But again, I'll leave that up for you to decide. I should tell you as well that info is something that will never run out in this group, so you better organize your time well, to be able to examine it!!! Nevertheless, I will always be here to help you in any way I can, although until now, I still get help from the group rather than giving it! (((Hugs))) Tia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Welcome Robin, I am Sharon and am from Australia (we are from ALL over the world here :->). It is thought that I have type 3 (H-EDS) with some periodontal family issues as well. I too am a dislocator or shoulders (and many others) and am in an immobiliser right now after a very nasty dislocation to right shoulder (Anterior/Superior) on December 30th and relocation about 30hrs later (i thought it had relocated successfully and it hadn'y :-<). I also have ACL issues in my left knee ( have had ACl reconstructed twice but tore it all out again in June 2002).. Again welcome Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Welcome Robin, I am Sharon and am from Australia (we are from ALL over the world here :->). It is thought that I have type 3 (H-EDS) with some periodontal family issues as well. I too am a dislocator or shoulders (and many others) and am in an immobiliser right now after a very nasty dislocation to right shoulder (Anterior/Superior) on December 30th and relocation about 30hrs later (i thought it had relocated successfully and it hadn'y :-<). I also have ACL issues in my left knee ( have had ACl reconstructed twice but tore it all out again in June 2002).. Again welcome Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Welcome Robin, I am Sharon and am from Australia (we are from ALL over the world here :->). It is thought that I have type 3 (H-EDS) with some periodontal family issues as well. I too am a dislocator or shoulders (and many others) and am in an immobiliser right now after a very nasty dislocation to right shoulder (Anterior/Superior) on December 30th and relocation about 30hrs later (i thought it had relocated successfully and it hadn'y :-<). I also have ACL issues in my left knee ( have had ACl reconstructed twice but tore it all out again in June 2002).. Again welcome Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Hi, Are you sure you don't have a fibroid? Endometrial ablation is not effective if there are fibroids. Otherwise, it's supposed to be very effective. Look into UFE. (uterine fibroid embolization) which is extremely effective for bleeding problems. It was first performed on women who had bad childbirths and had very bad bleeding. it is also done today for this reason, along with fibroid issues. of course, it is not really recommended for women who want to have children, I should say no long term studies but has been possible. Check the other group out, Embo group. I learned so much there. (Uterine Fibroid embolization) Hope it helps, Jen > I am 35 years old in Buffalo New York: had an endometrial ablation procedure 14 months ago for severe bledding and cramping during my periods. Two months ago the cramping returned and this last weekend, the bleeding returned (other than some light spotting I did not get a period for almost a year). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Hi, You can only do a resection on certain fibroids. They have to be small and they can't be in the uterus wall very deep. How large was your fibroid in the first place? Becase it sounds like they didn't get it all. If it grew back twice the size, did it still fall into the acceptable size range for a resection? I'm confused. I'm not so sure that I wouldn't run from your doc. Do you know if they even got it all the second time? The same fibroids don't grow back if they are totally removed so this shouldn't be a problem. BC pills can make them grow and after a while they won't stop heavy bleeding. Doesn't sound like a good option for you anyways. Ku Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 In a message dated 12/3/2004 4:50:32 PM Eastern Standard Time, eskola@... writes: > If anyone would be willing to do an overview of how you treat this problem > naturally, I would be surely thankful for your time and efforts! > first thing i would do is try to get a hold of those old lab results. second thing i would do is call my local pharmacy and see if they could tell me of a doc who prescribes Armour. go to him/her and get new bloodwork....TSH, Free T4 and Free T3 and antibodies. I have a feeling once you get those results, you'll get your Armour prescribed. When you say treating " naturally " ...the best thing you can do if you have low thyroid - is to take natural thyroid hormone. Cindi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 In a message dated 12/3/2004 4:50:32 PM Eastern Standard Time, eskola@... writes: > If anyone would be willing to do an overview of how you treat this problem > naturally, I would be surely thankful for your time and efforts! > first thing i would do is try to get a hold of those old lab results. second thing i would do is call my local pharmacy and see if they could tell me of a doc who prescribes Armour. go to him/her and get new bloodwork....TSH, Free T4 and Free T3 and antibodies. I have a feeling once you get those results, you'll get your Armour prescribed. When you say treating " naturally " ...the best thing you can do if you have low thyroid - is to take natural thyroid hormone. Cindi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 In a message dated 12/3/2004 4:50:32 PM Eastern Standard Time, eskola@... writes: > If anyone would be willing to do an overview of how you treat this problem > naturally, I would be surely thankful for your time and efforts! > first thing i would do is try to get a hold of those old lab results. second thing i would do is call my local pharmacy and see if they could tell me of a doc who prescribes Armour. go to him/her and get new bloodwork....TSH, Free T4 and Free T3 and antibodies. I have a feeling once you get those results, you'll get your Armour prescribed. When you say treating " naturally " ...the best thing you can do if you have low thyroid - is to take natural thyroid hormone. Cindi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Welcome to our great group of friends. I am a 44 year old (young) female.Around 8 years ago I was first dx'd with MS, then a year and a half ago they changed it to PLS. This can all be very scary when you finally find out what the problem is. Please feel free at asking any questions you may have, we will all try our very best at helping you out. Here are a few sights you can take a look at to help you out a little. http://www.sp-foundation.org/pls.htm http://www.sp-foundation.org/chart.htm http://www.als-pls.org/PLSdata.htm http://www.geocities.com/freyerse/ Again welcome, you didnt mention your name or where you live. I am very happily married almost 24 years, have a 23 and 17 year old sons and live in Salem, Oregon. Try to take care, stress does not work well with PLS, I know thats easier said than done, but not worth getting sick over. Sandy New Member Hi...I am a new member to the group. I am a 36 year old male that was diagnosed with PLS a little over a year ago. I was diagonsed at the Forbes Norris Clinic. Through all the research I have done, I have not been able to find another person that has been affected by PLS at my age. If there is anyone out there my age or knows of someone my age, please contact me. It has been a struggle coping with this. I have always been a very active person. 14 years ago, I was playing Div 1 college basketball. I continued to play bball until about 8 years ago when I noticed something going on. It took me a while to get up the courage to go to a doctor because I knew something serious was going on. My new wife, the love of my life, gave me the courage. Here I am! I look forward to the support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Hi Panic, This is Lynn in Santa . I was diagnosed in 2001 with PLS at UCSF. The first symptoms started in late 1990's in my mid-40's. I have a detailed list on my website. http://spoilingaunty.tripod.com/id18.html Glad you found the PLS Friends. Lynn http://spoilingaunty.tripod.com New Member Hi...I am a new member to the group. I am a 36 year old male that was diagnosed with PLS a little over a year ago. I was diagonsed at the Forbes Norris Clinic. Through all the research I have done, I have not been able to find another person that has been affected by PLS at my age. If there is anyone out there my age or knows of someone my age, please contact me. It has been a struggle coping with this. I have always been a very active person. 14 years ago, I was playing Div 1 college basketball. I continued to play bball until about 8 years ago when I noticed something going on. It took me a while to get up the courage to go to a doctor because I knew something serious was going on. My new wife, the love of my life, gave me the courage. Here I am! I look forward to the support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 --- Hello: And welcome to the group. I know exacatly how you feel I was a 43 year old male in aug. 2003 when they told me I had PLS and I was perfectly healthy and worked in a steel mill 50 to 70 hours every week on rotating 12 hour shifts and went to regular doctors,nero's,ciopractors,horse doctors,and finally wound up at a supposed to be a specialtist and managed to keep working until sept. 2004 when I could not stand up on my on two legs any longer and I was 44. But have since turned 45 and still have the problem and am still trying to figure out if I have somthing else wrong. It doesn't hurt to try and prove them wrong. I just joined this group myself and people tried to get me to join back in 2003 and I kept dening I had it all this time and still dening it but I always was one to do somthing like that. But you know this is the place to be because these folks here listen and have more info than any doctor will ever give you and have all kind of moral support and I know all the people around me close get tired of hearing about my problems but these people here don't because they have the same problem. I don't know much about this PLS but these people in this group do because there are years and years of experience and living with it here. Danny in TN. In PLS-FRIENDS , " westernpanic " <westernpanic@y...> wrote: > > Hi...I am a new member to the group. I am a 36 year old male that > was diagnosed with PLS a little over a year ago. I was diagonsed at > the Forbes Norris Clinic. Through all the research I have done, I > have not been able to find another person that has been affected by > PLS at my age. If there is anyone out there my age or knows of > someone my age, please contact me. It has been a struggle coping > with this. I have always been a very active person. 14 years ago, > I was playing Div 1 college basketball. I continued to play bball > until about 8 years ago when I noticed something going on. It took > me a while to get up the courage to go to a doctor because I knew > something serious was going on. My new wife, the love of my life, > gave me the courage. Here I am! I look forward to the support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Yes, you are on the young side, so sorry that you had to find us. From the SPF chart: The reported age of onset ranges from 35-66 years with a median of 50.5 years. A rare, child-onset form has been reported. You will not find a better group for knowledge and support. There are several younger people out there, you are not alone! dale New Member > > > Hi...I am a new member to the group. I am a 36 year old male that > was diagnosed with PLS a little over a year ago. I was diagonsed at > the Forbes Norris Clinic. Through all the research I have done, I > have not been able to find another person that has been affected by Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Thanks for the info. My name is Dean and I live in Costa Mesa, CA. > Hi Panic, > > This is Lynn in Santa . I was diagnosed in 2001 with PLS at UCSF. The > first symptoms started in late 1990's in my mid-40's. I have a detailed > list on my website. http://spoilingaunty.tripod.com/id18.html > > Glad you found the PLS Friends. > > Lynn > > http://spoilingaunty.tripod.com > > New Member > > > > Hi...I am a new member to the group. I am a 36 year old male that > was diagnosed with PLS a little over a year ago. I was diagonsed at > the Forbes Norris Clinic. Through all the research I have done, I > have not been able to find another person that has been affected by > PLS at my age. If there is anyone out there my age or knows of > someone my age, please contact me. It has been a struggle coping > with this. I have always been a very active person. 14 years ago, > I was playing Div 1 college basketball. I continued to play bball > until about 8 years ago when I noticed something going on. It took > me a while to get up the courage to go to a doctor because I knew > something serious was going on. My new wife, the love of my life, > gave me the courage. Here I am! I look forward to the support. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Thanks! I denied having anything serious wrong with me for about 7 years. Now that I know what it is, I am determined to not let it get the best of me! > > > > Hi...I am a new member to the group. I am a 36 year old male that > > was diagnosed with PLS a little over a year ago. I was diagonsed > at > > the Forbes Norris Clinic. Through all the research I have done, I > > have not been able to find another person that has been affected by > > PLS at my age. If there is anyone out there my age or knows of > > someone my age, please contact me. It has been a struggle coping > > with this. I have always been a very active person. 14 years ago, > > I was playing Div 1 college basketball. I continued to play bball > > until about 8 years ago when I noticed something going on. It took > > me a while to get up the courage to go to a doctor because I knew > > something serious was going on. My new wife, the love of my life, > > gave me the courage. Here I am! I look forward to the support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Thank you! One of my friends that I played basketball with in college, played professionally in Turkey for a year. > Hi westernpanic, > > This is Alper from Izmir/Turkey. Nice to meet you. > Welcome to board of beautiful friends. I bet you feel > like home here. Except PLS you can ask me about eye > problems too. > Best wishes > Alper-14 years ALS-43-M > > > Alper Kaya > So far so good > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 THanks! My name is Dean and I live in Costa Mesa, CA. My online name has nothing to do with my situation. It is a name I have used participating in various contest with friends! Not that I haven't panic'ed about my situation, but I would say overall, I have handled the news pretty well. Yes, Dr is a very nice person. He also told me that I didn't have ALS. Yes, is there. I only visited the clinic once. I look forward to talking with everyone! > Hi Panic, > > No need to panic...we're here. I go to UCSF ALS Research and Treatment > Center. I was diagnosed with PLS at about 50 but had symptoms a few years prior. > During my search of neurologists, it was Dr. who told me that I > didn't have ALS! Loved that man! Do you know , the clinical nurse? I > think when he left UCSF he went to Forbes Norris. I miss him. I need to contact > him and give information about PLS that he can hand out to newly diagnosed > PLS patients. I gave UCSF the info and they made up a packet for their newly > diagnosed PLSers. I encourage them to use me as a contact and I have heard > from a few people over the last few years. HIPPA makes it difficult but at > least they can give out my name. > > I live in Fremont and we had our first TeamWalk in Pleasanton last October > and we'll have another either in October or September. I'm taking the liberty > of forwarding your email to PLSers-NEWS because some people who are on NEWS > are not on FRIENDS. Jeivan lives in SF, and is a physician at Oakland > Children's Hospital, and she has PLS and also goes to UCSF. I think there > are about 6 PLSers who go to UCSF that I know. Of course, if replies to > PLSers-NEWS, you'd need to be also on that List or I could forward it to you > since I am on both Lists (as well as the HSP List). > > As Flora mentioned, we have a foundation--the Spastic Paraplegia Foundation > and we cover PLS and also HSP (Hereditary Spastic Paraplegia). This year we > will be able to grant $500,000 in research grants. Last year we awarded 1 > 2-year grant for $90,000 for PLS and 1 2-year grant for $90,000 for HSP. Our > world-wide community keeps growing and growing. > > We've had a couple of Connections (get togethers/meetings) here in Fremont. > They have been in Fremont because that's where I live and I organized them. > Anyone can organize one and people come! Right now I'm in Phoenix and one > of the ladies here had a luncheon and there were 16 of us. It's great just to > talk to people who know what we're talking about. We're here to go to > Spring Training (go A's and Giants) and we came a day early so we could go to the > luncheon! > > I'm on the Board of Directors of the SPF so if you have any questions about > SPF that you can't find on our website, please don't hesitate to call or write > to me. > > Gentner > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Thank you! Look forward to chatting with everyone! My name is Dean and I live in Costa Mesa, CA. > Yes, you are on the young side, so sorry that you had to find us. From the > SPF chart: > The reported age of onset ranges from 35-66 years with a median of 50.5 > years. A rare, child-onset form has been reported. > > You will not find a better group for knowledge and support. There are > several younger people out there, you are not alone! > > dale > New Member > > > > > > > > Hi...I am a new member to the group. I am a 36 year old male that > > was diagnosed with PLS a little over a year ago. I was diagonsed at > > the Forbes Norris Clinic. Through all the research I have done, I > > have not been able to find another person that has been affected by Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Welcome to our world, Jill. I've had PLS about 10 years now. All your symptoms sound familiar to most of us. The best medicine is to meet other PLSers and to talk. We have several websites with lots of information. If you'd like them, let me know and I'll forward to you directly. Dale gave you the SPF website and you can find tons of stuff there but sometimes it's more comfortable just to talk to others. The SPF homepage shows all our upcoming Events. We have Connections all over the country (whenever/wherever someone is willing to hold one). Our National Conference is Sep. 30-Oct. 2 in Columbus, Ohio this year and we have 6 local TeamWalk Connections in September and October. They will be in Vancouver, RI, OK, CA, AZ and NY. Also a Casual Connection that Flora just posted about in Tampa Bay in October. Also the annual Autumn in Carolina in October and Bart is holding a Connection in TN in August. If at all possible, try and attend one of our Connections or do go to the ALS Support Group. Let us know where you live (if you'd like) -- we may know someone who lives close to you. Gentner Fremont, CA Alone we can do so little. Together we can do so much. Helen Keller (1880-1968) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Hi Jill, I have PLS also, so far; anyway, yes you should contact your ALS rep. they can help you in a lot of ways. Bart New Member Hello All: My name is Jill, and I am new to this group. I am 47yrs old and was only diagnosed about 6 mths ago. I have been having symptoms for the last 3 years. I first noticed when I fell while bending over. I knew something was wrong. I had balance difficulty, gait problems, spasticity in both legs and arms. I get tired very easily, and I have weakness in my arms. Most recently I have very slow speech, and some choking incidences. At first my neurologist thought I had MS, but all my tests were negative. They say that PLS does not affect the brain, but I have difficulty being focussed, I do not remember anything, and it takes a while to understand stuff. Sometimes I feel like I am retarded, my brain is very slow. I am still employed and I drive to and from work every day, but it is becoming increasingly difficult. I am a single parent, with the only source of income, so I have to work. I use a cane to help me walk. I have difficulty discussing my condition with anyone, even my doctor. I get very emotional, and then I am unable to speak. I thought it would help me if I could share with others like myself. They wanted me to go to an ALS clinic, but I just could not deal with it. Does anyone else out there have similar problems, or feel the way I do? Looking forward to hearing from you guys. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Welcome to a great group, too bad you had to find us however. PLS doesn't affect the brain directly but as our body does less and less on it's own the brain gets bogged down doing all these automatic things it never had to. Like your PC, as you put more and more programs on it, the PC gets slower and slower, unfortunately we can't upgrade! Emotions, you bet same thing, you can cry at strange times, or like you I can't talk when I get upset. It's like my brain is being bombarded so fast I can't keep up. I worked with autistic people for a bit and that is their problem, the brain can't filter out what it should. I will say GO to the ALS support group, I was like you but my wife and I decided to try it, it was one of the best things we did. These people are so full of life, you will be amazed and to talk to other face to face, well it's fantastic. Go to the SPF web page and read about PLS. http://sp-foundation.org/ dale 52 diagnosed 24th dec 2002 totally disabled since Jan. 2003 New Member > > Hello All: > > My name is Jill, and I am new to this group. I am 47yrs old and was > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Hey Jill, Im sorry Im late responding but I just got back from the beach.I live in GA.I can relate to all your problems.I was just diagnosed in March 2004.Have you been to the Emory Clinic in Atlanta.They are a great group of Drs and helpful people?If you want to know more about them I can give you the information if you want. Your Friend; --------------------------------- Yahoo! Mail Stay connected, organized, and protected. Take the tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Jill, How old are your children? I have HSP and have raised my two boys after I was diagnosed when they were 2 and 4 and they are now 15 and 17 and they are great boys! This group will listen and help you find some things that might help you--at least they will listen and give you support! Sue Me > Lean on this group and your clinic in Atlanta for help. > > Lynn > I am a single parent, with the only source of income, so I have to work. > I use a cane to help me walk. > > Jill oved] Quote Link to comment Share on other sites More sharing options...
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