Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Welcome to the group. I am sure you will find lots of information and support here. Sue, mother of , 10, hearing, and , 8 (as of today!) hoh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Hi ! I am relatively new here also. Welcome! I have enjoyed reading about the diverse families and how they find what works for them. My son is profound due to meningitis at 5 mos. He is 4 yrs old now and uses a cochlear implant. Along the way though we used HA's and ASL. We still sign some... dropped it on his own. lipreads too. This is a great place because we all respect each families decisions and we try to help with some of the problems that come up. attends an oral deaf preschool in public school. There are only 9 kids from our county attending and none live close but at least he sees them at school. Mom to 4 yrs old, N24 8/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Nice to see you here. I watch this list all the time, whether I am directly responding or not. One of the things I especially like about it is that it is archived, so I can always go back and search for something in the past. Helps me get past my " delete-phobia " . Another great thing is the responses from Kay that send you to the appropriate part of the web site to answer questions. Often the answers are there, I just didn't know where to look for them. And, further, the help from Celeste in the journey through the IEP jungle is wonderful! Welcome. Judith, co-mom with Dawn of Pearl, ph, , , and Angie at home deaf, HOH, HOH, normal, hyperacusis, normal - at least in hearing and Jody and Rechal, who think they're grown up cuz they moved out three cats, a hearing dog named Gadget and getting two new puppies tomorrow for hearing dog training (thank goodness the stupid crayfish expired) and a partridge in a pear tree (LOL) New Member Hello All, My name is , but most people know me as 'Hana's Mom " ! Hana is my nine year old daughter. She has a severe to profound, bi-laterial, sensori-neural loss, since birth. She was diagnossed by ABR testing at nine days old. At this time we are living in a rather isolated area from other deaf children. Hana is the first deaf child to ever attend this public school district. She has an interpreter skilled in both ASL and SEEII. At home we use SEEII but are beginning an ASL course. My future goal for Hana is that she master both ASL and oral/written English by the time she graduates. I feel it is my responsibility to give her open doors to all areas of deafness and language so that when she is an adult she may choose freely between the deaf and hearing communities and not be forced into one or the other due to my choices in language. Hana does not have a Cochlear. I was told she was inelligible when she was two because she does retain some hearing, just not enough to hear speech. At this time she in not interested in receiving a Cochlear. She wears hearing aids and uses an FM system at school. Her speech has already progressed beyond what I ever imagined possible. She will complete the DASLII speech program this year. I have heard lots of great things about the Listen-up forum and am hoping to meet some nice people that are sharing the same experience of raising a deaf child! Thanks-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Welcome " Hana's mom " . LOL Nice to meet you. You will find a lot of great people with all different stories here on listen-up. I know I've learned a lot in the past month. Donna mother of ny 5 mod/severe hl New Member > Hello All, > > My name is , but most people know me as 'Hana's Mom " ! Hana is my nine year old daughter. She has a severe to profound, bi-laterial, sensori-neural loss, since birth. She was diagnossed by ABR testing at nine days old. At this time we are living in a rather isolated area from other deaf children. Hana is the first deaf child to ever attend this public school district. She has an interpreter skilled in both ASL and SEEII. At home we use SEEII but are beginning an ASL course. > > My future goal for Hana is that she master both ASL and oral/written English by the time she graduates. I feel it is my responsibility to give her open doors to all areas of deafness and language so that when she is an adult she may choose freely between the deaf and hearing communities and not be forced into one or the other due to my choices in language. > > Hana does not have a Cochlear. I was told she was inelligible when she was two because she does retain some hearing, just not enough to hear speech. At this time she in not interested in receiving a Cochlear. She wears hearing aids and uses an FM system at school. Her speech has already progressed beyond what I ever imagined possible. She will complete the DASLII speech program this year. > > I have heard lots of great things about the Listen-up forum and am hoping to meet some nice people that are sharing the same experience of raising a deaf child! > > Thanks-- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 In a message dated 2/19/01 9:22:24 AM Eastern Standard Time, craddock@... writes: > My son also > had a cholestiotoma in his better hearing ear. Thank goodness it was removed > before any major damage.My sons cardiologist said that there is a link > between children with heart diease and " small ear canals " ?? My three sons > (sounds like a tv show?,I am showing my age) all have heart disease and > small hear canals and alot of problems with ear wax. > Hi Ruth! This is really interesting! How was the cholestiotoma detected? After the first 2 of the 4 surgeries her ear closed up and that is when they sent us to Boston to have more surgery. The cholestiotoma wasnt' discovered until the ear was opened up. It didnt' even show up on the CAT SCAN. In June of 1999, when was 12 yrs old is when the heart problems were discovered. She has AV Nodal Reentrant Tachycardia and a leak in the aortic valve. And the ear wax!!!! It is not a problem in the bad right ear because it doesn;t produce any wax at all. The new ear canal is lined with a skin graft from her upper arm. the left ear produces so much that we have to have it removed by the ENT or the pediatrician. It doesn't come out on it's own. And that makes the hearing in that ear go down! It seems to be a no win situation!!! Anyways, I am glad to be here and to have met you. suki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Hi Suki, Welcome! I am so sorry for all your daughters problems! My son also had a cholestiotoma in his better hearing ear. Thank goodness it was removed before any major damage.My sons cardiologist said that there is a link between children with heart diease and " small ear canals " ?? My three sons (sounds like a tv show?,I am showing my age) all have heart disease and small hear canals and alot of problems with ear wax. God bless you and best of luck, be strong and hang in there! Ruth mom of Dylan(hearing loss) & Adam 4 & big bro n 7 New Member > Hi everyone, > > I am new here, my name is Sue, but I go by Suki. I have a 13 yr old daughter > who is hearing impaired with a severe loss in the right ear and a moderate > loss in the left ear. At about the age of 3 yrs old, we found out that she > had a congenital defect in both ears, canal stenosis. After hoping that the > ear canals would widen on there own, it was decided to surgically widen them. > She had 4 operations to widen the right ear canal. The last 2 were in Boston > MA. The first on lasted 10 hous because they found cholestiotoma in the ear > canal, around the eardrum and around the first two hearing bones. The ear > drum and hearing bones were removed and the ear canal was opened up. Two > months later the ear canal was closed again and nothing was keeping it > opened. she went back in for more surgery. In this surgery, the replaced the > eardrum with a bigger one, and replaced the hearing bones with one prothesis. > She has a new ear canal made in the mastiod bowl. This was done in 1996. Her > hearing has gone down even more, but not a lot. She has hearing aids and has > just started wearing the right one after years of not wanting to wear it. > > She has an IEP in school and has just been placed in a language based self > contained special ed classroom in another junior high in our small city. We > do have a case manager from the Commision for the deaf and hard of hearing > and just finished up an Independent Educational Evaluation at the Boston > Center for Deaf and Hearing Impaired Children. As well as being hearing > impaired, Steph also has 2 heart conditions, ADD, and several different > learning styles. She also has delays in her emotional, and behavioral > developments. > > Since being placed in the special; ed class this school year, she has started > doing wonderfully!! This is her second year in the 7th grade. > > At home, Steph has a 15 yr old sister, Aimee, and me, her mom. We also have a > pet dwarf rabbit. > > Well thank you for letting me join this group and I apologize for such a long > intro. > > suki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 > I am new here, my name is Sue, but I go by Suki. Welcome Suki! We're glad to have you with us! Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Hi Blair... I have a friend from New Jersey, and I asked her if she had any info for you - so don't be suprised if you receive an e.mail from her! Regards New Member Hi, my name is Blair and I am a new member. My son is 4 years old and he has moderate hearing loss in both ears. We just found out a few months ago. Now he has BTE hearing aids. I have seen much improvement with him but he still seems to have difficulty hearing everthing and he does have delayed speech. He is in a Language based pre-school program at school but I was wondering if he should be in a special schoool for hearing-impaired children. I try so hard to do the right thing for him and it is all so overwhelming! I appreciate your support. Are there any organizations in New Jersey that is helpful with all of this? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 He is in a > Language based pre-school program at school but I was > wondering if he should be in a special schoool for > hearing-impaired children. I try so hard to do the > right thing for him and it is all so overwhelming! Welcome, Blair! I was in your shoes just a few months ago with a newly-diagnosed 4-year-old son and I can tell you that the smartest thing I did was to log onto Listen-up and to join this list. There is such a wealth of knowledge here and everyone is very willing to share (that's why we're here). As far as your question about school, I think your decision will need to be based on many factors. My son also had speech delays (he was in special ed and speech therapy for a year before I insisted on the hearing test) and was in a " language-based " preschool program. In our case, that setting didn't work (various reasons which included a class size of 20 kids, an SLP with ZERO experience with HOH children, has a condition that appears to be causing further HL) and we have now placed in a school specifically for hearing impaired kids at school district expense. The school uses total communication and that has worked wonderfully in our particular case. ( is basically oral but is a very visual kid and does best with sign and speech together. The sign has also eased his frustration when he can't make something understood because of his speech delay.) Of course, only you know your son and what will be comfortable for your family. How do you personally feel when you are in your son's classroom (if you have that opportunity)? How well is the staff listening to your concerns and addressing them? Do you have an IEP in place and what does it call for in terms of dealing with your child's particular needs? Your school district may have a whole different approach than mine and/or programs that are more appropriate for a child with hearing loss. I hope that someone on the list can steer you to someone who can help advocate for you in your area. I had that luxury with someone here and I truly think we'd still be struggling if not for her. Carol - mom to . 4.10, mod to severe/profound HL, EVAS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Hi Carol, thanks for writing back to me. My son is in a very nice school environment. He has 7 children in his class and 2 teachers, as well as a speech therapist on hand, which he gets 3 times per week. The teachers are very protective of and treat him very well. He is also learning alot there and has made friends. I really worry about him when it comes to kindergarten and older. I want him to be in a school where he can excel and not have difficulties. Blair mother of Kaitlin(5) and (4 HOH) --- cbenecke wrote: > He is in a > > Language based pre-school program at school but I > was > > wondering if he should be in a special schoool for > > hearing-impaired children. I try so hard to do the > > right thing for him and it is all so overwhelming! > > Welcome, Blair! I was in your shoes just a few > months ago with a > newly-diagnosed 4-year-old son and I can tell you > that the smartest thing I > did was to log onto Listen-up and to join this list. > There is such a wealth > of knowledge here and everyone is very willing to > share (that's why we're > here). > > As far as your question about school, I think your > decision will need to be > based on many factors. My son also had speech > delays (he was in > special ed and speech therapy for a year before I > insisted on the hearing > test) and was in a " language-based " preschool > program. In our case, that > setting didn't work (various reasons which included > a class size of 20 kids, > an SLP with ZERO experience with HOH children, > has a condition that > appears to be causing further HL) and we have now > placed in a school > specifically for hearing impaired kids at school > district expense. The > school uses total communication and that has worked > wonderfully in our > particular case. ( is basically oral but is a > very visual kid and does > best with sign and speech together. The sign has > also eased his frustration > when he can't make something understood because of > his speech delay.) > > Of course, only you know your son and what will be > comfortable for your > family. How do you personally feel when you are in > your son's classroom (if > you have that opportunity)? How well is the staff > listening to your > concerns and addressing them? Do you have an IEP in > place and what does it > call for in terms of dealing with your child's > particular needs? Your > school district may have a whole different approach > than mine and/or > programs that are more appropriate for a child with > hearing loss. I hope > that someone on the list can steer you to someone > who can help advocate for > you in your area. I had that luxury with someone > here and I truly think > we'd still be struggling if not for her. > > Carol - mom to . 4.10, mod to severe/profound > HL, EVAS > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Hi , I really appreciate that you sent your friend my e-mail. She said she would help me since she went through this herself. I thought that was very nice of her. Thanks so much. Blair --- wrote: > Hi Blair... > I have a friend from New Jersey, and I asked her if > she had any info for > you - so don't be suprised if you receive an e.mail > from her! > Regards > > New Member > > > Hi, my name is Blair and I am a new member. My son > is > 4 years old and he has moderate hearing loss in > both > ears. We just found out a few months ago. Now he > has > BTE hearing aids. I have seen much improvement > with > him but he still seems to have difficulty hearing > everthing and he does have delayed speech. He is > in a > Language based pre-school program at school but I > was > wondering if he should be in a special schoool for > hearing-impaired children. I try so hard to do the > right thing for him and it is all so overwhelming! > I > appreciate your support. Are there any > organizations > in New Jersey that is helpful with all of this? > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2001 Report Share Posted March 9, 2001 Hi Blair... It was a pleasure . I 'spoke' to her last night, and told me that she would be helping you - we all need all the help we can get! Good Luck! New Member > > > Hi, my name is Blair and I am a new member. My son > is > 4 years old and he has moderate hearing loss in > both > ears. We just found out a few months ago. Now he > has > BTE hearing aids. I have seen much improvement > with > him but he still seems to have difficulty hearing > everthing and he does have delayed speech. He is > in a > Language based pre-school program at school but I > was > wondering if he should be in a special schoool for > hearing-impaired children. I try so hard to do the > right thing for him and it is all so overwhelming! > I > appreciate your support. Are there any > organizations > in New Jersey that is helpful with all of this? > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2001 Report Share Posted March 9, 2001 In a message dated 3/9/2001 8:08:45 PM Eastern Standard Time, im3carfan3@... writes: > we were referred to chapel hill, > where we very fortunate to qualify for the CCCDP (Carolina Children's > Communicative Welcome to the list! We use UNC too and they won't push you into anything, they are so supportive of the families and what is best for the children. The program paid what insurance didn't pay on my sons implant so I a right fond of them!!!! My son was BARELY a borderline candidate for the implant by audiogram, but was implanted due to speech delay and having auditory neuropathy. We first thought of it when he just turned four. He was implanted at the age of 5 years with a language level of about 2-2.5 years. He was 5 and 7 months starting kindergarten because of his birthday. So, I understand the concern about entering Kindergarten with such a large language gap because I am living that nightmare now. My son is repeating this year, but I knew it going into school so I wasn't a shock.....just that I sometimes feel that it is SO unfair to him to be the only Kindergartner with pages of 5 pages of homework, reading, speech therapy and language therapy EVERY day, even weekends just trying to get caught up. Then he knows it is weird that he is the only 7 year old in the class and doesn't understand why. I really regret the fact that I made the decision not to implant him at 4 years because I think they year could have made a big difference for him. Anyway, its late and I will go but feel free to email me personally or IM me if you see me online. Beat4girl@.... Where are you from? Elaine Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2001 Report Share Posted March 11, 2001 Have they recommended the use of Fast Forword with Jake? It's a great way of improving a child's ability to process auditory information. beat4girl@... wrote: > > In a message dated 3/9/2001 8:08:45 PM Eastern Standard Time, > im3carfan3@... writes: > > > we were referred to chapel hill, > > where we very fortunate to qualify for the CCCDP (Carolina Children's > > Communicative > > Welcome to the list! We use UNC too and they won't push you into anything, > they are so supportive of the families and what is best for the children. > The program paid what insurance didn't pay on my sons implant so I a right > fond of them!!!! > My son was BARELY a borderline candidate for the implant by audiogram, but > was implanted due to speech delay and having auditory neuropathy. We first > thought of it when he just turned four. He was implanted at the age of 5 > years with a language level of about 2-2.5 years. He was 5 and 7 months > starting kindergarten because of his birthday. > > So, I understand the concern about entering Kindergarten with such a large > language gap because I am living that nightmare now. My son is repeating > this year, but I knew it going into school so I wasn't a shock.....just that > I sometimes feel that it is SO unfair to him to be the only Kindergartner > with pages of 5 pages of homework, reading, speech therapy and language > therapy EVERY day, even weekends just trying to get caught up. Then he knows > it is weird that he is the only 7 year old in the class and doesn't > understand why. I really regret the fact that I made the decision not to > implant him at 4 years because I think they year could have made a big > difference for him. > > Anyway, its late and I will go but feel free to email me personally or IM me > if you see me online. Beat4girl@.... > Where are you from? > Elaine > > Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Hi Martha, I tried to send you a welcome message last night but I'm quite sure it didn't work. My name is Annette, I'm 59 years old, and I have dermatomyositis. I'm glad you joined this group. You'll enjoy the give and take of our dialogue with each other. I've found the people within this group to be very helpful, caring, and even at times entertaining. They share our ups and downs when there may be no one else who understands. Welcome and let us hear from you. Annette NEW MEMBER Hello Everyone.... Please WELCOME our newest member, Martha, to the list. When you feel comfortable, please tell us a little bit about yourself. We have a wonderful group of people here so we hope you enjoy your stay. Thank you for joining. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Hi Welcome to the group......I have DM and had swelling & pain for months before the weakness showed up....unfortunately I was then misdiagnosed for several more months......be thankful that you have a dr that found it quickly. Prednisone is a love/hate situation.....I love it for returning me to a point where i could function again as a person.....I hate it for the side effects....but balancing it out if I had to make the choice again I would go for the pred. With a few limitations I lead a normal (if dull) life. Everyone reacts differently so there are probably as many different opinions as there are people on the list.....this is just my 2 cents worth Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Welcome My name is , am 40 years old, and I was diagnosed in April 2000 with PM. I too was on high doses of prednisone (60 mg/day) and experienced quite a bit of weight gain (roughly 45 pounds) and excessive hair growth (facial and arms). I know that these are common side effects but nonetheless hated !!!! It has been well over a year and no signs of shedding any of the weight even though I am now down to 15 mg/day !!! I am also getting methotrexate injections once a week and take Fosamex for osteoporosis. Now for the newest news...I had my annual physical a few weeks ago and low and behold if they didnt send me a card stating that my glucose levels are way too high as well as my cholesterol !!! It was suggested by them that I go on the Sugar Busters Diet (which I ordered from Amazon). Anyone with any knowledge of this diet ??? I will not be starting this until after I return from my cruise as I know Ill be eating anything and everything I can get my hands on while on the boat !!! Isnt that the whole point of a cruise ??? As for work, I am still struggling with working 40 hours/week. As you know, I am not doing this by choice. My rheumy sent me a letter last Friday to give my boss stating that I should be working a maximum of 30 hours/week but I havent given it to them yet. Yesterday was a tough day for me mentally as I wanted to tell them where they could stick their job all day but bit my tongue and toughed it out. They insist on having me 40/hours or nothing. A little birdie (actually one of my best friends who works here with me) told me that the owner of the company I work for talked to her about my situation and mentioned to her that they may have to lay me off due to the fact that he doesnt think I am getting better. His words to her were that if in fact he does lay me off that he was thinking of offering to pay my medical insurance for a year so that I wont have to worry about that. Wellllllll, that is dandy but I am outraged that he has put me in this prediciment. I have stress! ed way too much over this and am almost to the point of walking out. My resentment seems to be a little beter today though as I dont feel the need to choke the hell out of someone yet. Yes I realize it is only 9:45 am !!! I am going this afternoon to have my cystoscopy done. It was originally scheduled for last week and I drove one hour to get there only to be told that the doctor had " just called in " and was sick as a dog. I was given a banana as a consolation prize and sen on my merry way. Was able to have the Urodynamic Testing done last week and hopefully between the two tests, they will have a solution to my weak bladder muscles. I am game for any solution at this point !!!! So there you have it, the trials and tribulations of my life at the present time !!! Ill just keep on keeping on and smiling the whole way !!! As Ive always said.....Eat one live toad in the morning and nothing worse can happen the whole day !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 , Welcome to the group. My son's DM started with facial rash and because of his age we really don't know how long he may have been experiencing muscle weakness and pain. Very quickly his muscles began to deteroate and he was in obvious pain. 's experience with Prednisone has been mostly for the postitive. Because he was treated so quickly, he has no permanent muscle damage and is doing very well at this time. I have met other patients who were diagnosed before the muscle pain and weakness set in. Your Doctor sounds like a good one! They are hard to find. Like individuals who get a cold, some just suffer the sniffles and in others the cold causes fever and days of bed rest, myositis can affect different people to different degress. Don't think that because others have some different symptoms or more aggressive symptoms that this would mean that you may not have the same thing. Does that make sense? I am having a hard time saying this correctly :-). Again, welcome. You have come to the right place for support and information! Hugs, Cari >From: TeddiFromOK@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: New Member >Date: Wed, 5 Sep 2001 00:25:57 -0500 (CDT) > >Hi > >Welcome to the group......I have DM and had >swelling & pain for months before the weakness >showed up....unfortunately I was then misdiagnosed for several more >months......be >thankful that you have a dr that found it >quickly. >Prednisone is a love/hate situation.....I love >it for returning me to a point where i could >function again as a person.....I hate it for >the side effects....but balancing it out if I >had to make the choice again I would go >for the pred. With a few limitations I lead >a normal (if dull) life. > >Everyone reacts differently so there are >probably as many different opinions as >there are people on the list.....this is just >my 2 cents worth > > >Teddi >mailto:teddifromok@... > > > > > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Hello and welcome to the group. I am so sorry that you have been diagnosed with this disease. Do you have PM or DM? Please don't look at the sites and base your symptoms on that alone. All of us have very different symptoms. I know people who have a CPK of 300 who are very ill and yet other people with a CPK of 8,000 that feel fine. It's a very strange how this disease works. We've all had the love hate relationship with prednisone and I can understand your concern. When I entered the hospital my CPK was almost 12,000, I was very sick and could barely walk at all. The prednisone brought that down but I've been left with damaged muscles. The longer you let the inflammation go on the more damage that can be done to your muscles. Doctors hit the disease hard with the high dose of Prednisone first. If that doesn't work to get it under control they bring out the other drugs like immunosuppressants. If you're very much against the prednisone and the other drugs used to control and treat this disease, then antibiotics might be the way to go and see if it works for you. It's a toss up and many doctors won't prescribe the antibiotics for this disease. Connie might be able to find a doctor in or around your area that would. If you haven't taken any treatment at all, how are you currently feeling? How's your breathing? I can tell you that Prednisone will put weight on you. I gained 65 lbs, had the moon face, water retention, facial hair. But, on the good side, without it I wouldn't be here. I was able to breath better, brought down the inflammation in my muscles and lungs. I was put on an immunosuppressant early on so I could lower my prednisone level. I developed steroid myopathy and had to reduce the prednisone level. The most important thing to remember is that almost everything in your body either IS a muscle or run BY a muscle. Treatment, whichever way you choose to go, should be started as soon as possible to get the disease under control. Hope this helps a little and please let us know how your doing. This is the place to vent. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2001 Report Share Posted September 28, 2001 Hi Gayle, I'm Annette and I, too, have DM. Looking forward to hearing from you. New Member Hello Everyone.... Please Welcome our newest member, Gayle, to the list. We're so glad you've found us and we hope you enjoy your stay. Gayle has DM. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Hello Lynn and welcome aboard. I have PM and consider myself lucky in that I don't have to also worry about the rash that all you DM'ers have. I feel for you. The hair loss is baffling to me since your not on any meds to cause this. I've heard this happen to other people with DM. I am wondering if it has anything to do with the rash being on the scalp? We all hate the drugs taken but here I am three years after being diagnosed and I'm down to 10mgs of Prednisone. I had to increase back to 10 because my adrenal gland has stopped functioning, I'll be put on a different drug on the 11th when I see my doctor. Then I can get back down to the 2mgs I was once taking. I also use to take Imuran and I have been able to get off that as well. I currently take Enbrel, Celebrex, Clonazepam along with my Multi Vit., Vit. C, Vit E, Potassium and my Calcium. I think the hardest time for any person is the very beginning of your disease. It's hard to understand, hard to treat, hard to do normal everyday tasks, and very hard for everyone around you to understand. As time goes on it will get better.... Please ask any question you like and we're open to all venting... :~) Hope you have a great day. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Thanks for the warm welcome, Vicki...it's so nice to have a place to come for understanding, support and knowledge... I want to alter my diet and eat " stuff " to nourish my muscles...so may ask for a consult to a nutritionist. Has anyone done this at the start of their myositis? BTW, my doc said something about hair loss being part of DM, but I can't find anything online at any of the web sites, so far, to support it. Oh well. Can't loose weight, can loose hair...and at my age, going through menopause, if that has to happen, I sure wish I'd loose my chin hairs!! Jeepers! LOL! My mom has nasty psoriasis, it runs in my family. Ouch...but so far, I'm just itchy in scalp, don't see a rash. Lynn --- anzavic@... wrote: > > Hello Lynn and welcome aboard. > > I have PM and consider myself lucky in that I don't > have to also worry > about the rash that all you DM'ers have. I feel > for you. The hair > loss is baffling to me since your not on any meds to > cause this. I've > heard this happen to other people with DM. I am > wondering if it has > anything to do with the rash being on the scalp? > We all hate the drugs > taken but here I am three years after being > diagnosed and I'm down to > 10mgs of Prednisone. I had to increase back to 10 > because my adrenal > gland has stopped functioning, I'll be put on a > different drug on the > 11th when I see my doctor. Then I can get back down > to the 2mgs I was > once taking. I also use to take Imuran and I have > been able to get off > that as well. I currently take Enbrel, Celebrex, > Clonazepam along with > my Multi Vit., Vit. C, Vit E, Potassium and my > Calcium. > I think the hardest time for any person is the very > beginning of your > disease. It's hard to understand, hard to treat, > hard to do normal > everyday tasks, and very hard for everyone around > you to understand. > As time goes on it will get better.... Please ask > any question you like > and we're open to all venting... :~) Hope you have > a great day. > > Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Lynn Before I got the PM I was a BIG health nut. Worked out every day for about 3 hrs and was very physically fit. So, I still continued with my eating pattern after I was diagnosed. Once the Prednisone started though, I noticed I CRAVED protein. I was never a big meat eater but soon found myself looking at all the steers on the side of the road. Just looking at them melted my mouth... and I would get the biggest hunger pain. Cheese was another thing I couldn't get enough of. My doctor said he understood because I was losing protein out of my muscles and my body needed more to rebuild. It took about a year to stop craving so much protein and I'm slowly getting back to normal. I eat a lot of salads, yogurt and fresh fruits every day. I don't drink soda of any kind unless I'm out and there is nothing else to drink. Water is my choice of liquid. My doctor advised me to get off all soft drinks in the very beginning. When I went on the 60mgs of Prednisone I didn't know that I would lose my hair and developed hair where no woman was suppose to have it. I woke up one morning, looked in the mirror and thought my face was dirty. Turned out that overnight I grew fine black hairs all across my forehead and cheek area. I had more hair on my body that on my head. Not a pretty site. The Nair that I tried to use burned my skin so I SHAVED my face....LOL I'm thankful that I developed the steroid myopathy because I was taken down from the high dose. Whew!!!!! Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Hi Lynn Welcome to the group....you came to the right place......lots of information, compassion and freedom to gripe,whine or moan as needed. I have DM and the muscle biopsy isn't that bad ...of course everyone is different (our stock refrain) I had mine done as an outpatient and had very little discomfort......Hope you get your answers soon. Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 Lynn, Hi and welcome. I am Cari. My son, , was diagnosed with Juvenile DM in Jan. of 99 at the age of 3. He is doing very well now and is in Kindergarten. He had his muscle biopsy done in his right thigh and tolerated it very well. We used Advil for discomfort but it really didn't seem to bother him too much. started out on high doses of Prednisone and after 28 months was completely weaned off of it as of this past June 1. He is still on Plaquenil which he takes for his rash which has been under control for over 2 years now. DM and JDM have a lot of similarities and some differences. You have certainly found the right place for answers and compassion. Welcome. Hugs, Cari --- Original Message ----- From: Lynn To: OurMyositis Sent: Sunday, September 30, 2001 10:29 PM Subject: Re: New Member Hi Teddi!!Thanks for the welcome!Sometimes I can be the biggest baby! LOL! Well, skinbiopsy first, then maybe an EMG, then maybe a musclebiopsy. What kinds of medicine are the DM'ers of the group on?I've heard a quinine for malaria (for the rash) and amed used to prevent organ rejection that's also givenfor rheumatoid arthritis, and lots of otherinteresting stuff. Wow, this is going to be sometrip!! The beginning sure hasn't been fun!!Lynn--- TeddiFromOK@... wrote:> Hi Lynn> Welcome to the group....you came to the right> place......lots of information, compassion and> freedom to gripe,whine or moan as needed.> I have DM and the muscle biopsy isn't that> bad ...of course everyone is different (our> stock refrain) I had mine done as an outpatient> and had very little discomfort......Hope you > get your answers soon.> > > Teddi> mailto:teddifromok@...> > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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