Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Welcome My son is 22 and had his last surgery in June and has been totally deaf since then. He doesn't have any of the other problems that you asked about but is still adjusting to the deafness. He doesn't have much of a social life which sometimes is upsetting to him. I guess part of the adjusting period. Do you have trouble being with groups of people or getting involved in things? It sounds like you have been through a lot already Best Wishes Sue from Ohio. Jennette Braaten wrote: > Name: > Location: Western Australia > email: rimme@... > Relationship: Patient > > Why I'd like to join: > I\'m 27 and have been deaf for just over a year from acoustic neuromas. I > had quite a few operations and am getting a bit fed up of it lol lol. I also > have Lupus (SLE) and would be interested if anyone else has that as well as > NF2. Also I would like to know if anyone else has had a stroke as my doctors > feel that NF2 might have caused mine. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 , last year I went in for spinal cord surgery, NF2 related and a shunt was put in to drain the cyst that was causing fluid to build up and strangle off the spinal cord. I ended up having three strokes and was put on life support for 8 days. There was little hope that I would recover, but here I am, so yes, I do think that NF2 does have some relationship to strokes. My daughter also has NF2 and her last MRI showed that she also had had a small stroke at some point, however she does not know when that might have been. She has ANs on each ear, as I do also. Hers are very small and do not need any attention at this point. Her hearing test she passed with flying colors. Probably more info than you were looking for.......in Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Hi and welcome from Brisbane , good to see another Aussie on the crew, My son Shane is 21, had first AN done March this year and has a little hearing on other side still, nothing else at this stage, but i think he might have had a stroke after his surgery, but nobody would ever tell me. Good luck you have joined a great group if you want to know anything. and Shane in hot and sunny Brisbane Name: Location: Western Australiaemail: rimme@...Relationship: PatientWhy I'd like to join:I\'m 27 and have been deaf for just over a year from acoustic neuromas. Ihad quite a few operations and am getting a bit fed up of it lol lol. I alsohave Lupus (SLE) and would be interested if anyone else has that as well asNF2. Also I would like to know if anyone else has had a stroke as my doctorsfeel that NF2 might have caused mine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Hi Jennette Yep social life is hard I am pretty right with one or two people but only if they know bits of sign language then I can sort of lip read and read the signs but they have to slow down on their talking and pronounce words properly, but if there is a group of people I am lost and then just feel left out. I think also your social life is affected because people don't want to be with deaf people they think they are deaf as well as stupid or they are embarrassed because they have to speck a bit more slowly and sometimes repeat things or they are just down right afraid of " catching " the deafness bug lol lol It takes alot of getting used to and just when you think your on top of it something happens to remind you that you might not be as normal as other people,so I can certainly feel for your son and the adjustments he is going thru. Take Care Australia Re: New Member > Welcome > My son is 22 and had his last surgery in June and has been totally deaf since > then. He doesn't have any of the other problems that you asked about but is > still adjusting to the deafness. He doesn't have much of a social life which > sometimes is upsetting to him. I guess part of the adjusting period. Do you > have trouble being with groups of people or getting involved in things? It > sounds like you have been through a lot already Best Wishes Sue from Ohio. > > Jennette Braaten wrote: > > > Name: > > Location: Western Australia > > email: rimme@... > > Relationship: Patient > > > > Why I'd like to join: > > I\'m 27 and have been deaf for just over a year from acoustic neuromas. I > > had quite a few operations and am getting a bit fed up of it lol lol. I also > > have Lupus (SLE) and would be interested if anyone else has that as well as > > NF2. Also I would like to know if anyone else has had a stroke as my doctors > > feel that NF2 might have caused mine. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 I agree 100%. Seems like you no longer " fit in " . Marie Re: New Member >Hi Jennette >Yep social life is hard I am pretty right with one or two people but only if >they know bits of sign language then I can sort of lip read and read the >signs but they have to slow down on their talking and pronounce words >properly, but if there is a group of people I am lost and then just feel >left out. I think also your social life is affected because people don't >want to be with deaf people they think they are deaf as well as stupid or >they are embarrassed because they have to speck a bit more slowly and >sometimes repeat things or they are just down right afraid of " catching " the >deafness bug lol lol It takes alot of getting used to and just when you >think your on top of it something happens to remind you that you might not >be as normal as other people,so I can certainly feel for your son and the >adjustments he is going thru. >Take Care Australia > Re: New Member > > >> Welcome >> My son is 22 and had his last surgery in June and has been totally deaf >since >> then. He doesn't have any of the other problems that you asked about but >is >> still adjusting to the deafness. He doesn't have much of a social life >which >> sometimes is upsetting to him. I guess part of the adjusting period. Do >you >> have trouble being with groups of people or getting involved in things? >It >> sounds like you have been through a lot already Best Wishes Sue from >Ohio. >> >> Jennette Braaten wrote: >> >> > Name: >> > Location: Western Australia >> > email: rimme@... >> > Relationship: Patient >> > >> > Why I'd like to join: >> > I\'m 27 and have been deaf for just over a year from acoustic neuromas. >I >> > had quite a few operations and am getting a bit fed up of it lol lol. I >also >> > have Lupus (SLE) and would be interested if anyone else has that as well >as >> > NF2. Also I would like to know if anyone else has had a stroke as my >doctors >> > feel that NF2 might have caused mine. >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Nope - I don't.. because you should be living in Australia where it is warm in winter tooooooo. But then again if I came over you could keep me warm with all those recopies you have written.. and I would have an excuse to have hot toddies, not that I need an excuse.... We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri.... New Member > Sandy > Welcome to the crew!!!!I Hope we can help you out. You will get lots of > support here as well as answers to many questions. > Marnie (in ccccccccold snowy Canada where it is -35C today!!!) > Bri ..don't ya feel sorry for me?? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Oh dear - I was supposed to say welcome to Sandy -- don't hit me Sandy --- you will find some very nice people here........ - in sunny - just the right temp 28 c in Queensland Australia...... New Member > > > > Sandy > > Welcome to the crew!!!!I Hope we can help you out. You will get lots of > > support here as well as answers to many questions. > > Marnie (in ccccccccold snowy Canada where it is -35C today!!!) > > Bri ..don't ya feel sorry for me?? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Marnie, we had 74*F, sunny, picture perfect weather here in Chandler, AZ. Sorry but I just couldn't resist replying. JD New Member SandyWelcome to the crew!!!!I Hope we can help you out. You will get lots of support here as well as answers to many questions.Marnie (in ccccccccold snowy Canada where it is -35C today!!!)Bri ..don't ya feel sorry for me?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard. We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri.... Send and receive Hotmail on your mobile device: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Yer - right .... Bri... Re: New Member Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard. We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri.... Send and receive Hotmail on your mobile device: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 I was afraid he meant me:) I was adding too his "drinks to buy Lowi list:)"!! Lowi who would likes to drink on a guys dime:) Re: New Member Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard. We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri.... Send and receive Hotmail on your mobile device: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 We will do that in June... Bring plenty of your dimes...... Re: New Member Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard. We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri.... Send and receive Hotmail on your mobile device: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Hi --since your symptoms are manageable you are in an excellent position to research your options. Many women on this list have had myos or UAEs. One thing I think this group agrees on is that choosing a treatment, whether alternative or surgery, is a very individual process that involves time and research. The fact that your gyno's first suggestion was myo and not hysterectomy is noteworthy. Surgery is always a risk and outcomes are variable no matter what procedure you undergo, so take your time and read, read, read, read. Faryl > I am new to this group. I am 40 years old and I have several > fibroids. The largests one is the size of a 14 week pregnancy. My > symptoms have changed recently within the last year. The excessive > bleeding lasts one day and my periods are shorter. I still feel the > fatigue and the lower back pain. I am taking ferro-sequels, but I am > currently not anemic. My gynocologist has suggested a myomectomy but > since my symptoms are manageable, I am very undecided. What do you > folks think? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2004 Report Share Posted July 31, 2004 Hello my name is Kim. I am so glad that you could join us and sad that you have to. If there is anything that I can help you with just please let me know. I have not been with the group for very long but I had a very warm welcome and made to feel right at home. I am on AOL,MSN and Yhoo if you would like to put me on your buddy list I would love to chat with you, I am on just about all the time unless I am having a bad flare up and then I will stay in bed. Well, I just wanted to say welcome, Take care my new friend and I hope to hear from you soon. Kim -- New Member My name is and I am a new member. I have had RSD for about 3 years and I'm on my 3rd doctor. My first doctor had me on too much medicine but my current one does not have my on enough. I used to belong to a few groups but as member posts became fewer and fewer I stopped checking in on the group. It is strange to know details of peoples lives that you will more than likely never "meet". I plan to read the group's messages daily and respond when I can. I read some posts from a member from Louisiana, which is my home state. I was wonderful which city Ms. Ducote is from. I know some Ducotes from Mandeville and River Ridge. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2004 Report Share Posted July 31, 2004 Hello Welcome to the group. My name is Laurie and I'm a few states north of you in MINNESOTA. Feel free to e-mail me at lroepke@.... Hope you will find many more warm welcomes. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 HI, Diane, Welcome to the group! So glad to have you join us! How old are you, Diane? I know that should you be nearing menopause, or if you're estrogen dominant you could easily add natural progesterone cream and it's proven to add bone. However, I seriously doubt that you'll lose bone due to thyroid treatment. Let us know the results to your bone scan as well. It's probably a good thing to get a baseline reading anyway. in Va. Hi, I recently joined this list because I am on Armour Thyroid and have been for years. However, having moved to Charlotte, NC a couple of years ago I find the doctor I am using is very concerned about my " running high " on my blood tests. Previously, I went to an endocrinologist in the Boston area who felt that this is what works for me and it was OK. My current doctor, not an endocrinologist, tells me that it is Ok but that he is concerned about bone loss and wants me to have regular bone scans. Anyone have any experience with this? I will get my test results from the doctor's office tomorrow on the thyroid test and post them for your input. Thank you. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 If it involves a very high Free T4 for a long ongoing period (and this would be up and over range for awhile), then it might be a risk, but otherwise, an emphatic NO. A low TSH does not denote thyroid hormone, since it is a pituitary hormone that either stimulates (higher) or doesn't stimulate the thyroid (low) to make more hormone. All bets are off on TSH, when a person takes thyroid hormone from the outside of the body. If a person feels good and has no hyper symptoms, then their body is handling the thyroid hormone correctly and it's not too much for THEM. Hypothyroid chronically speaking, is much more of a risk for osteoporosis than this could ever be. Doctors are so confused and unlearned about what the function of the TSH is, due to wrong training and brainwashing by what the makers of T4 meds have to say about all this, because they are geared t'wd selling their products. new member > Hi, > I recently joined this list because I am on Armour Thyroid and have > been for years. However, having moved to Charlotte, NC a couple of > years ago I find the doctor I am using is very concerned about > my " running high " on my blood tests. > Previously, I went to an endocrinologist in the Boston area who felt > that this is what works for me and it was OK. > My current doctor, not an endocrinologist, tells me that it is Ok > but that he is concerned about bone loss and wants me to have > regular bone scans. > Anyone have any experience with this? I will get my test results > from the doctor's office tomorrow on the thyroid test and post them > for your input. > Thank you. > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Nice to see you Sue. Lou Sue wrote: > > I've actually been on the list for a couple of months, but have been > lurking in the shadows. I am a type 2 diabetic controlled by diet, > exercise, and oral medications. I have been diagnosed for about ten > years, but I believe that I had had diabetes for years before diagnosis. > > Some of you know me as GrannySue on the diabetesworld mailing list. I > am still in that group, but missed all of the refugees. I emailed > Lou, who gave me directions on how to join. I've just been soaking up > all of the knowledge. > > Sue > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Nice to see you Sue. Lou Sue wrote: > > I've actually been on the list for a couple of months, but have been > lurking in the shadows. I am a type 2 diabetic controlled by diet, > exercise, and oral medications. I have been diagnosed for about ten > years, but I believe that I had had diabetes for years before diagnosis. > > Some of you know me as GrannySue on the diabetesworld mailing list. I > am still in that group, but missed all of the refugees. I emailed > Lou, who gave me directions on how to join. I've just been soaking up > all of the knowledge. > > Sue > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Nice to see you Sue. Lou Sue wrote: > > I've actually been on the list for a couple of months, but have been > lurking in the shadows. I am a type 2 diabetic controlled by diet, > exercise, and oral medications. I have been diagnosed for about ten > years, but I believe that I had had diabetes for years before diagnosis. > > Some of you know me as GrannySue on the diabetesworld mailing list. I > am still in that group, but missed all of the refugees. I emailed > Lou, who gave me directions on how to join. I've just been soaking up > all of the knowledge. > > Sue > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi, there, Sue! Vicki, waving wildly New Member > > I've actually been on the list for a couple of months, but have been > lurking in the shadows. I am a type 2 diabetic controlled by diet, > exercise, and oral medications. I have been diagnosed for about ten > years, but I believe that I had had diabetes for years before > diagnosis. > > Some of you know me as GrannySue on the diabetesworld mailing list. I > am still in that group, but missed all of the refugees. I emailed > Lou, who gave me directions on how to join. I've just been soaking up > all of the knowledge. > > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 Hello Beverley and welcome to our group. Judging by my experience, you will find belonging a great help in denying denial and keeping on with your treatment. We have lofty goals here that we talk about a LOT: Most of us want to get our numbers as close to non-diabetic as we can, thereby winning a healthy life. Some of us already know what happens when you are uncontrolled enough to begin to suffer with consequences. Me, for one. I have extensive neuropathy; however my eyes, kidneys and cardiac system are in excellent condition. I want to keep all the function I can. Being here with others who feel mostly the same, who have the same difficulties I encounter trying for tight control, is inspiring. Plus there is a lot of information from members who speak from their own experiences. I think you will find you are in a good place here. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 LOL Beverly, I have two reasons for continuing to be on diabetes mailing lists after 7 years .. one is to keep up with the latest and to learn from others successes, failures etc. The second is so that every day I am forced to remember I am a diabetic. I need to be told every day. It keeps me thinking about diet, bgs, exercise and other things it would be very convenient to 'forget'. Suzz, t2, d & e, dx97 ------------- > My reason for joining a group like this is my constant fall into denial and complacency. I hope through daily reading from this group, denial won't happen as much. Thank you for letting me join, bye for now Beverley. > ---------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 Another reason I keep up after 7+ years with the " 800 pound gorilla, " as Susie used to call diabetes, is that you've all become my Diabetic Family and you're very important to me. Some people come and go ...and then there's the old faithfuls...like Tootie...and Ressie...and Helen...and Suzz...and many others. It means a lot to me that I can share what I've learned about diabetes and good diabetic control and hopefully, motivate at least a few people and save them from the dreaded consequences of poor control. Vicki Re: new member > > > LOL Beverly, > > I have two reasons for continuing to be on diabetes mailing lists > after 7 years .. one is to keep up with the latest and to learn from > others successes, failures etc. The second is so that every day I am > forced to remember I am a diabetic. I need to be told every day. It > keeps me thinking about diet, bgs, exercise and other things it would > be very convenient to 'forget'. > > Suzz, t2, d & e, dx97 > > ------------- >> My reason for joining a group like this is my constant fall into > denial and complacency. I hope through daily reading from this group, > denial won't happen as much. Thank you for letting me join, bye for > now Beverley. >> ---------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 it means a lot to newbies to the list to have you here. Ive been in denial too long. Have my right wrist in a cast so just thanks barb in nh ----- It means a lot to me that I can share what I've learned about diabetes and good diabetic control and hopefully, motivate at least a few people and save them from the dreaded consequences of poor control. Vicki ----- Original Message ----- > I have two reasons for continuing to be on diabetes mailing lists > after 7 years .. one is to keep up with the latest and to learn from > others successes, failures etc. The second is so that every day I am > forced to remember I am a diabetic. I need to be told every day. It > keeps me thinking about diet, bgs, exercise and other things it would > be very convenient to 'forget'. > > Suzz, t2, d & e, dx97 > Quote Link to comment Share on other sites More sharing options...
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