Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 Ed and Regina, Welcome to the group. Ask any questions you'd like that's what we are here for. I remember the anticipation and fear before our daughter was born. Once you see you will be so overwhelmed with love, clubfeet or not. Looking back I can say the casting, braces etc. were really no big deal, even though it seems to be at first. Good luck, we will be praying for a safe delivery. Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 Ed and Regina, Welcome to the group. Ask any questions you'd like that's what we are here for. I remember the anticipation and fear before our daughter was born. Once you see you will be so overwhelmed with love, clubfeet or not. Looking back I can say the casting, braces etc. were really no big deal, even though it seems to be at first. Good luck, we will be praying for a safe delivery. Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 Ed and Regina, Welcome to the group. Ask any questions you'd like that's what we are here for. I remember the anticipation and fear before our daughter was born. Once you see you will be so overwhelmed with love, clubfeet or not. Looking back I can say the casting, braces etc. were really no big deal, even though it seems to be at first. Good luck, we will be praying for a safe delivery. Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi, I'm responding a little late because I am so busy these days. I spoke with you on the phone when you first found out about the clubfoot - at the time I was very pregnant and expecting soon. (My name is KC by the way!) Just a quick update - was born 7/26 with bilateral clubfeet, and was casted at 4 days old. After three one week casts, a tenotomy, and then a final three week cast, the doctor said his feet looked beautiful. He is now in the DBB full time until early December, at which time he can cut back. He is doing great, I can't believe how fast it's gone, and I am thrilled with my doctor, who is out of town, NJ. I remember you lived in NJ, and was wondering if you had chosen a doctor? I can't say enough about Dr. Rieger, and he is very faithful to the Ponsetti Method. Please feel free to call or e-mail with any questions, and I wish you guys the best of luck with the upcoming birth! KC and -- In nosurgery4clubfoot@y..., " ERal98 " <eralston9@c...> wrote: > After finding out through U/S a few months ago that our daughter will > have a left clubfoot, we discovered this support group. We posted > our results and have heard from some of you who have helped us better > understand this abnormality and how to go about fixing it. We havent > been posting much as we dont have the experience (yet) that most of > you have. But we have been reading and learning! We are now in our > 38th week and expecting to be born any day now. We just wanted > to thank you all for sharing extremely important information and > especially being here the day we found out about 's foot. I am > so happy I jumped on the computer that day and found you all. I > literally went from thinking " my little girl is gonna be in braces > all her life " to understanding clubfoot, if treated correctly, can > lead to a perfectly normal life. And thanks especially for whoever > created this group! You all are wonderful people! > > You all are sure to start seeing alot more posts from us shortly as > we will be asking many questions as we go through the next year, > especially the first 6 months. But we'll try not to be too much of a > pain in the you know what! > > Ed, Regina, and soon to be Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 congratulations on your little girl! hopefully mom is doing okay - as far as waiting the 10 days, dr. ponseti told me to try to get up to iowa within the first 14 days after birth. we left florida when kelby was 12 days old and he had his first casts put on when he was 13 days old. glad your daughters foot has healed up enough to start her casting - please keep us posted on her progress - and try to post pictures (including her face :-) when you get a chance! again - congrats! Tia & Kelby 8-3-01 bilateral Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 congratulations on your little girl! hopefully mom is doing okay - as far as waiting the 10 days, dr. ponseti told me to try to get up to iowa within the first 14 days after birth. we left florida when kelby was 12 days old and he had his first casts put on when he was 13 days old. glad your daughters foot has healed up enough to start her casting - please keep us posted on her progress - and try to post pictures (including her face :-) when you get a chance! again - congrats! Tia & Kelby 8-3-01 bilateral Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 congratulations on your little girl! hopefully mom is doing okay - as far as waiting the 10 days, dr. ponseti told me to try to get up to iowa within the first 14 days after birth. we left florida when kelby was 12 days old and he had his first casts put on when he was 13 days old. glad your daughters foot has healed up enough to start her casting - please keep us posted on her progress - and try to post pictures (including her face :-) when you get a chance! again - congrats! Tia & Kelby 8-3-01 bilateral Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Dylan was 12 days old when he got his first cast and he did just great I know they say to cast ASAP but I don't think it caused any harm waiting a few days. ERal98 wrote:Well, we are proud to announce the birth of our baby girl . She is such a cutie! She was born with unilateral club foot (right). One problem we have encountered is that she was born on the 20th and we were to get her first cast on the 24th. But by the 23rd, she had developed a scab on the outside of her club foot ankle from rubbing it on the sheets when she kicked. We noticed it was getting red at first and tried socks as well as jumpers. It was too late though as the scab had gotten better but didnt disappear fully before our first casting appointment. The doctor told us he cant cast over a scab and we would have to wait until the scab went away. We are now 10 days after her birth with another appointment tomorrow and her scab is gone. I am a bit concerned that we have missed a week. My question is this: Have we done harm by not casting immediately? Or are we still in good shape? I have read here and other places that the first cast must be applied within 2 or 3 days. I hope this extra week doesnt effect the healing process for her club foot. Thoughts? Thanks, Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Dylan was 12 days old when he got his first cast and he did just great I know they say to cast ASAP but I don't think it caused any harm waiting a few days. ERal98 wrote:Well, we are proud to announce the birth of our baby girl . She is such a cutie! She was born with unilateral club foot (right). One problem we have encountered is that she was born on the 20th and we were to get her first cast on the 24th. But by the 23rd, she had developed a scab on the outside of her club foot ankle from rubbing it on the sheets when she kicked. We noticed it was getting red at first and tried socks as well as jumpers. It was too late though as the scab had gotten better but didnt disappear fully before our first casting appointment. The doctor told us he cant cast over a scab and we would have to wait until the scab went away. We are now 10 days after her birth with another appointment tomorrow and her scab is gone. I am a bit concerned that we have missed a week. My question is this: Have we done harm by not casting immediately? Or are we still in good shape? I have read here and other places that the first cast must be applied within 2 or 3 days. I hope this extra week doesnt effect the healing process for her club foot. Thoughts? Thanks, Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Dylan was 12 days old when he got his first cast and he did just great I know they say to cast ASAP but I don't think it caused any harm waiting a few days. ERal98 wrote:Well, we are proud to announce the birth of our baby girl . She is such a cutie! She was born with unilateral club foot (right). One problem we have encountered is that she was born on the 20th and we were to get her first cast on the 24th. But by the 23rd, she had developed a scab on the outside of her club foot ankle from rubbing it on the sheets when she kicked. We noticed it was getting red at first and tried socks as well as jumpers. It was too late though as the scab had gotten better but didnt disappear fully before our first casting appointment. The doctor told us he cant cast over a scab and we would have to wait until the scab went away. We are now 10 days after her birth with another appointment tomorrow and her scab is gone. I am a bit concerned that we have missed a week. My question is this: Have we done harm by not casting immediately? Or are we still in good shape? I have read here and other places that the first cast must be applied within 2 or 3 days. I hope this extra week doesnt effect the healing process for her club foot. Thoughts? Thanks, Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 > Well, we are proud to announce the birth of our baby girl . She > is such a cutie! She was born with unilateral club foot (right). > ...I am a bit concerned that we have missed a week. My question > is this: Have we done harm by not casting immediately? Or are we > still in good shape? I have read here and other places that the > first cast must be applied within 2 or 3 days. I hope this extra > week doesnt effect the healing process for her club foot. Thoughts? > > Congratulations on your new baby daughter! I completely understand your concern, because I was feeling the same way a few weeks ago. Although the ideal is to start casting right away, my son got his first cast at 7 weeks and his course of treatment seems to be going fine. Please don't worry about those missed days! You are getting her correction started as soon as is possible and that is the important thing. I believe there are several families on this list who didn't find out about the Ponseti method until their babies were a few months old. The casts still work. Welcome, and I hope 's first casting goes well. Hannah with Silas 8/26/02 unilateral right cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 > Well, we are proud to announce the birth of our baby girl . She > is such a cutie! She was born with unilateral club foot (right). > ...I am a bit concerned that we have missed a week. My question > is this: Have we done harm by not casting immediately? Or are we > still in good shape? I have read here and other places that the > first cast must be applied within 2 or 3 days. I hope this extra > week doesnt effect the healing process for her club foot. Thoughts? > > Congratulations on your new baby daughter! I completely understand your concern, because I was feeling the same way a few weeks ago. Although the ideal is to start casting right away, my son got his first cast at 7 weeks and his course of treatment seems to be going fine. Please don't worry about those missed days! You are getting her correction started as soon as is possible and that is the important thing. I believe there are several families on this list who didn't find out about the Ponseti method until their babies were a few months old. The casts still work. Welcome, and I hope 's first casting goes well. Hannah with Silas 8/26/02 unilateral right cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Congrats on your baby girl! You still have plenty of time! My son wasn't correctly casted until 17 days by the Ponseti method and his foot was completed corrected by 9 weeks and went into the DBB. The earlier the better but you have done your daughter no harm. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Hi all >Date: Thu, 31 Oct 2002 00:16:02 -0000 > >Well, we are proud to announce the birth of our baby girl . She >is such a cutie! She was born with unilateral club foot (right). >One problem we have encountered is that she was born on the 20th and >we were to get her first cast on the 24th. But by the 23rd, she had >developed a scab on the outside of her club foot ankle from rubbing >it on the sheets when she kicked. We noticed it was getting red at >first and tried socks as well as jumpers. It was too late though as >the scab had gotten better but didnt disappear fully before our first >casting appointment. The doctor told us he cant cast over a scab and >we would have to wait until the scab went away. We are now 10 days >after her birth with another appointment tomorrow and her scab is >gone. I am a bit concerned that we have missed a week. My question >is this: Have we done harm by not casting immediately? Or are we >still in good shape? I have read here and other places that the >first cast must be applied within 2 or 3 days. I hope this extra >week doesnt effect the healing process for her club foot. Thoughts? > >Thanks, > >Ed, Regina and > _________________________________________________________________ Surf the Web without missing calls! Get MSN Broadband. http://resourcecenter.msn.com/access/plans/freeactivation.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Congrats on your baby girl! You still have plenty of time! My son wasn't correctly casted until 17 days by the Ponseti method and his foot was completed corrected by 9 weeks and went into the DBB. The earlier the better but you have done your daughter no harm. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Hi all >Date: Thu, 31 Oct 2002 00:16:02 -0000 > >Well, we are proud to announce the birth of our baby girl . She >is such a cutie! She was born with unilateral club foot (right). >One problem we have encountered is that she was born on the 20th and >we were to get her first cast on the 24th. But by the 23rd, she had >developed a scab on the outside of her club foot ankle from rubbing >it on the sheets when she kicked. We noticed it was getting red at >first and tried socks as well as jumpers. It was too late though as >the scab had gotten better but didnt disappear fully before our first >casting appointment. The doctor told us he cant cast over a scab and >we would have to wait until the scab went away. We are now 10 days >after her birth with another appointment tomorrow and her scab is >gone. I am a bit concerned that we have missed a week. My question >is this: Have we done harm by not casting immediately? Or are we >still in good shape? I have read here and other places that the >first cast must be applied within 2 or 3 days. I hope this extra >week doesnt effect the healing process for her club foot. Thoughts? > >Thanks, > >Ed, Regina and > _________________________________________________________________ Surf the Web without missing calls! Get MSN Broadband. http://resourcecenter.msn.com/access/plans/freeactivation.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Congrats on your baby girl! You still have plenty of time! My son wasn't correctly casted until 17 days by the Ponseti method and his foot was completed corrected by 9 weeks and went into the DBB. The earlier the better but you have done your daughter no harm. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Hi all >Date: Thu, 31 Oct 2002 00:16:02 -0000 > >Well, we are proud to announce the birth of our baby girl . She >is such a cutie! She was born with unilateral club foot (right). >One problem we have encountered is that she was born on the 20th and >we were to get her first cast on the 24th. But by the 23rd, she had >developed a scab on the outside of her club foot ankle from rubbing >it on the sheets when she kicked. We noticed it was getting red at >first and tried socks as well as jumpers. It was too late though as >the scab had gotten better but didnt disappear fully before our first >casting appointment. The doctor told us he cant cast over a scab and >we would have to wait until the scab went away. We are now 10 days >after her birth with another appointment tomorrow and her scab is >gone. I am a bit concerned that we have missed a week. My question >is this: Have we done harm by not casting immediately? Or are we >still in good shape? I have read here and other places that the >first cast must be applied within 2 or 3 days. I hope this extra >week doesnt effect the healing process for her club foot. Thoughts? > >Thanks, > >Ed, Regina and > _________________________________________________________________ Surf the Web without missing calls! Get MSN Broadband. http://resourcecenter.msn.com/access/plans/freeactivation.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Congratulations on the birth of ! My last two children were born with clubfoot, one with bilateral () and the other unilateral (). was not casted at all until he was 3 months old, and those were boot casts, non-Ponseti method. We started the Ponseti method when he was 4 months old. He is now 3 and his feet are perfect. was casted at 8 days old. He is now almost 7 months (already!) and his foot is looking great! Kim, Child of the King, Wife to , Mommy to Kaelyn, Chandler, Corey, , and NSP Consultant ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Congratulations on the birth of ! My last two children were born with clubfoot, one with bilateral () and the other unilateral (). was not casted at all until he was 3 months old, and those were boot casts, non-Ponseti method. We started the Ponseti method when he was 4 months old. He is now 3 and his feet are perfect. was casted at 8 days old. He is now almost 7 months (already!) and his foot is looking great! Kim, Child of the King, Wife to , Mommy to Kaelyn, Chandler, Corey, , and NSP Consultant ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Ed & Regina, Congratulations on 's birth. I wouldn't be too concerned about not having the casts put on right away. When my son Jakob was born, yes, casts were put on before he was 24 hours old. However, they were short (below the knee) casts that in my opinion did more harm than good. Less than 12 hours later, they had rubbed sores behind his knees that healed once some cotton (like is put under the plaster casts) was wrapped around his legs. When those casts were removed, Jakob went without casts for 2 days since our original orthopedic felt it would be a waste to cast him Monday and us have to remove them for the appointment with Dr. Weinstein on Wednesday. I don't think it caused a problem in the long run to have those couple days without the casts. ERal98 wrote: > Well, we are proud to announce the birth of our baby girl . She > > is such a cutie! She was born with unilateral club foot (right). > One problem we have encountered is that she was born on the 20th and > we were to get her first cast on the 24th. But by the 23rd, she had > developed a scab on the outside of her club foot ankle from rubbing > it on the sheets when she kicked. We noticed it was getting red at > first and tried socks as well as jumpers. It was too late though as > the scab had gotten better but didnt disappear fully before our first > casting appointment. The doctor told us he cant cast over a scab and > we would have to wait until the scab went away. We are now 10 days > after her birth with another appointment tomorrow and her scab is > gone. I am a bit concerned that we have missed a week. My question > is this: Have we done harm by not casting immediately? Or are we > still in good shape? I have read here and other places that the > first cast must be applied within 2 or 3 days. I hope this extra > week doesnt effect the healing process for her club foot. Thoughts? > > Thanks, > > Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Ed & Regina, Congratulations on 's birth. I wouldn't be too concerned about not having the casts put on right away. When my son Jakob was born, yes, casts were put on before he was 24 hours old. However, they were short (below the knee) casts that in my opinion did more harm than good. Less than 12 hours later, they had rubbed sores behind his knees that healed once some cotton (like is put under the plaster casts) was wrapped around his legs. When those casts were removed, Jakob went without casts for 2 days since our original orthopedic felt it would be a waste to cast him Monday and us have to remove them for the appointment with Dr. Weinstein on Wednesday. I don't think it caused a problem in the long run to have those couple days without the casts. ERal98 wrote: > Well, we are proud to announce the birth of our baby girl . She > > is such a cutie! She was born with unilateral club foot (right). > One problem we have encountered is that she was born on the 20th and > we were to get her first cast on the 24th. But by the 23rd, she had > developed a scab on the outside of her club foot ankle from rubbing > it on the sheets when she kicked. We noticed it was getting red at > first and tried socks as well as jumpers. It was too late though as > the scab had gotten better but didnt disappear fully before our first > casting appointment. The doctor told us he cant cast over a scab and > we would have to wait until the scab went away. We are now 10 days > after her birth with another appointment tomorrow and her scab is > gone. I am a bit concerned that we have missed a week. My question > is this: Have we done harm by not casting immediately? Or are we > still in good shape? I have read here and other places that the > first cast must be applied within 2 or 3 days. I hope this extra > week doesnt effect the healing process for her club foot. Thoughts? > > Thanks, > > Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Ed & Regina, Congratulations on 's birth. I wouldn't be too concerned about not having the casts put on right away. When my son Jakob was born, yes, casts were put on before he was 24 hours old. However, they were short (below the knee) casts that in my opinion did more harm than good. Less than 12 hours later, they had rubbed sores behind his knees that healed once some cotton (like is put under the plaster casts) was wrapped around his legs. When those casts were removed, Jakob went without casts for 2 days since our original orthopedic felt it would be a waste to cast him Monday and us have to remove them for the appointment with Dr. Weinstein on Wednesday. I don't think it caused a problem in the long run to have those couple days without the casts. ERal98 wrote: > Well, we are proud to announce the birth of our baby girl . She > > is such a cutie! She was born with unilateral club foot (right). > One problem we have encountered is that she was born on the 20th and > we were to get her first cast on the 24th. But by the 23rd, she had > developed a scab on the outside of her club foot ankle from rubbing > it on the sheets when she kicked. We noticed it was getting red at > first and tried socks as well as jumpers. It was too late though as > the scab had gotten better but didnt disappear fully before our first > casting appointment. The doctor told us he cant cast over a scab and > we would have to wait until the scab went away. We are now 10 days > after her birth with another appointment tomorrow and her scab is > gone. I am a bit concerned that we have missed a week. My question > is this: Have we done harm by not casting immediately? Or are we > still in good shape? I have read here and other places that the > first cast must be applied within 2 or 3 days. I hope this extra > week doesnt effect the healing process for her club foot. Thoughts? > > Thanks, > > Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Congratulations! Your baby should not have any problem with those extra days. Just enjoy your baby! Lorna > Well, we are proud to announce the birth of our baby girl . She > is such a cutie! She was born with unilateral club foot (right). > One problem we have encountered is that she was born on the 20th and > we were to get her first cast on the 24th. But by the 23rd, she had > developed a scab on the outside of her club foot ankle from rubbing > it on the sheets when she kicked. We noticed it was getting red at > first and tried socks as well as jumpers. It was too late though as > the scab had gotten better but didnt disappear fully before our first > casting appointment. The doctor told us he cant cast over a scab and > we would have to wait until the scab went away. We are now 10 days > after her birth with another appointment tomorrow and her scab is > gone. I am a bit concerned that we have missed a week. My question > is this: Have we done harm by not casting immediately? Or are we > still in good shape? I have read here and other places that the > first cast must be applied within 2 or 3 days. I hope this extra > week doesnt effect the healing process for her club foot. Thoughts? > > Thanks, > > Ed, Regina and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 I'm sorry for the delay introducing myself, but social phobia is one of my many & varied symptoms (listed later) & i had no idea where to start! I am the eldest daughter of one of your members, Lynne Hill & so far I have been unable to get a diagnosis that i'm happy with, at the moment I'm diagnosed as " depressed & agoraphobic " despite having seen the same neurologist that diagnosed my mum with mito. I have been having problems since i was 6 or 7 years old when everyone ( my teachers, parents & child psychologist) thought i was just " lazy " & " extremely bright " Although my symptoms were less then, I was already having bowel, concentration and depression problems (including social phobia). I'm going to stop there with the history, coz it would take all day, but feel free to ask me if there's anything you want to know. Following is a list of my symptoms so far, I find I keep adding to them as i find out that things I thought were " just me " are actually not normal. SYMPTOMS: Depression & Mania: I'm on a permanent emotional rollercoaster. I used to take Prozac but I found the side effects worse than the depression (the muscle weakness in my lower back was so aggravated i couldn't walk for more than half an hour before my legs were collapsing with the pain) so I stopped taking it. My depression comes with... Social phobia. Basically, new people & places give me panic attacks of varying severity. Panic attacks. (of varying severity) not all associated with the phobia. Sometimes they're so bad it feels like my heart is trying to get out of my chest. Sudden mood swings, usually unprovoked or unreasonably severe Manic episodes, sometimes lasting for days or weeks. This is more than just enthusiasm & feeling good, it's like an amphetamine rush, my mouth gets hardwired to my brain & i do & say really silly things Loss of concentration & a feeling that things aren't real. I can't concentrate enough to read a book or watch the T.V. (or order a meal) & I feel like I'm living in a dream. I have to ask questions or check things (like have I got my front door keys) over & over again before the answer sinks in. Migraines. I get them when I'm menstruating, or if I've been tired but still been energetic, or if I lay in bed after I wake up, or if I try to go to sleep when I'm not tired enough or on a long drive, or under strong overhead lighting. Also some foods & drinks, noticeably red wine, seem to cause them too. My migraines come with... Aversion to light, it hurts. Headrushes & fainting I used to actually black out & lose consciousness, but I'm learning when to get my head down. Occasional diarrhoea & sickness Mild visuals (usually) Like pulsing clouds of colour in the dark, or in more severe migraines, pulsing black clouds in the light & brilliant colours in the dark Muscle weakness & twitching: It actually seems to be a lack of stamina rather than weakness, but I've experienced both. Sometimes folding wet shirts or towels makes my arms & shoulders feel like I've done too many pushups, & walking makes my legs feel rubbery & not quite under control. Occasionally my legs will just refuse to bear my weight, or my fingers will refuse to hold a cup, or my arm will refuse to lift it. My muscles sometimes start to burn after a very short time. I get twitchy muscles all over, the same muscle will have twitchy episodes lasting for minutes or hours over days or weeks, sometimes i will have 2 or 3 on the go at the same time. I also get a weird feeling, (usually in my calf muscles but not confined to them) like I'm being poked, or a cramp is about to start. This all gets worse if I'm feeling run down. I get quite a lot of cramps, usually if I stretch but not always for an obvious reason. I get very painful menstrual cramps, sometimes they seem to be immune to painkillers. I also get a lot of trapped nerves, mainly in my neck/shoulders. Eye strain, if I'm tired or run down or if I've been watching T.V. or reading my vision will blur, i have glasses but they have never prevented the blurred vision Palpitations: I'm getting them more often than i used to. The first time it happened I was 18. Spastic movements / clumsiness: I'm forever lurching into things & banging my knees, shins & elbows, especially while I'm waking up (it can take 3 hours or more for me to be " with it " after I wake up). I'm always banging my knees on the furniture & my elbows on the door frames, I can't have furniture with sharp corners. Fatigue & insomnia: Sometimes i can't get to sleep, sometimes i can't stay asleep, my sleep is often disturbed for weeks at a time. I've always had trouble getting to sleep, it usually takes me an hour or two on a good day. Other times I will find I'm sleeping for 12 or 14 hours a day, sometimes more. If I get cold it makes me very tired & sleepy. I seem to get cold a lot, even in the summer when other people are warm enough or even too hot. I've noticed that the fatigue makes everything else worse Infections: I tend to go septic with very little excuse unless I'm very careful. I also get cystitis if I'm not constantly vigilant. I drink a lot (mostly tea) because if I don't I tend to get cystitis more easily. Eating problems: I found that eating little & often is best for me. If I try to eat normal portions it makes my belly bloat & makes my bowel worse. Eating makes me very tired sometimes. I'm also a very slow eater. I tend to go for long periods without eating, sometimes a day or two, because feeling hungry doesn't really bother me, I tend to forget about it until I'm shaking & feeling faint. I also find that if I'm feeling " hyper " i get hungry but when I've cooked, or bought something to eat I can't finish it, sometimes not even half of it, occasionally I can't even start to eat, even if I haven't eaten that day or the day before. Irritable bowel (bloating, constipation (kind of)): Usually I won't be able to go for days & my intestines feel like they're full of lego bricks (any movement or jarring hurts), then when i do I'm constipated for the first half, & the rest has the consistency of toothpaste. I've had hemorrhoids since I was 13 or 14 because of this. Other times It will be more like lots of pebbles (individual or stuck together like clay). This usually blocks the toilet. Out of the blue stabbing pains: These can be very painful, sometimes bad enough to stop me in my tracks. They are not confined to any particular part of my body, but i get them most often in my head & face, hands, feet & lower abdomen Joint pain: When I was 11 or 12 they told me it was " growing pains " . When I was 16 or 17 my doctor did blood tests for arthritis & told me that if they were negative it was nothing to worry about (they were negative). About a year later he told me it was probably R.S.I. & i lost my job over it. I used to have most problems with my wrists, hips, knees & ankles, but at the moment my hands are giving me the most trouble. Skin Problems: I get dry skin & what my Mother tells me is a form of eczema, I keep forgetting to ask when I visit my doctor. I also get cold sores & some very painful & long lived spots. All of this is worse when I'm run down. Miscarriage / infertility?: I had a very messy miscarriage when I was 17 & I had to have a scrape to get rid of the foetus and I bled a lot. Since then I have used no contraception and have never been pregnant since, as far as I know. When I was about 25 my doctor found I had an infection (non specific uterine) that may account for this though. I was prescribed a course of antibiotics which i took. Unfortunately, my phobia has so far prevented me from seeking further medical advice on this matter. OK, that's me in as small a nutshell as i could manage. Sorry it's a bit " epic " & I hope it's useful to someone. Louise Matchett Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Hi Louise and welcome to the list. I am and the youngest daughter to Alice who is the listowner here. She is out of town currently and won't be back til Monday, but I'm sure you'll hear from her then. I have a diagnosis of Mito as do all four of my children. This is a wonderful group of folks here. I'm not really going to comment on your symptoms except for one set of them: the depression and mania symptoms. Has anyone ever suggested you might have ADHD? Everything you mentioned goes hand and hand with ADHD. Next time you're feeling like this try drinking something like Mountain Dew. If you calm down especially with the mania I think you'll have the start of some answers. My son has ADHD and when we have run out of his meds and his out there jumping off the roof of our house (not literally) I'll go get him a mountain dew. He'll drink it and it's interesting but sometimes it will even make him sleepy. Can you imagine caffeine causing someone to fall asleep? It has something to do with the chemistry in the brain and how it works differently with someone with ADHD. I used to be on a list for families dealing with ADD/ADHD and over half of the moms on the list were dealing with each issue with their child that you mention. Anyway, just my thoughts. I hope you enjoy this group as much as I do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Hi Louise and welcome to the list. I am and the youngest daughter to Alice who is the listowner here. She is out of town currently and won't be back til Monday, but I'm sure you'll hear from her then. I have a diagnosis of Mito as do all four of my children. This is a wonderful group of folks here. I'm not really going to comment on your symptoms except for one set of them: the depression and mania symptoms. Has anyone ever suggested you might have ADHD? Everything you mentioned goes hand and hand with ADHD. Next time you're feeling like this try drinking something like Mountain Dew. If you calm down especially with the mania I think you'll have the start of some answers. My son has ADHD and when we have run out of his meds and his out there jumping off the roof of our house (not literally) I'll go get him a mountain dew. He'll drink it and it's interesting but sometimes it will even make him sleepy. Can you imagine caffeine causing someone to fall asleep? It has something to do with the chemistry in the brain and how it works differently with someone with ADHD. I used to be on a list for families dealing with ADD/ADHD and over half of the moms on the list were dealing with each issue with their child that you mention. Anyway, just my thoughts. I hope you enjoy this group as much as I do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Hi Louise and welcome to the list. I am and the youngest daughter to Alice who is the listowner here. She is out of town currently and won't be back til Monday, but I'm sure you'll hear from her then. I have a diagnosis of Mito as do all four of my children. This is a wonderful group of folks here. I'm not really going to comment on your symptoms except for one set of them: the depression and mania symptoms. Has anyone ever suggested you might have ADHD? Everything you mentioned goes hand and hand with ADHD. Next time you're feeling like this try drinking something like Mountain Dew. If you calm down especially with the mania I think you'll have the start of some answers. My son has ADHD and when we have run out of his meds and his out there jumping off the roof of our house (not literally) I'll go get him a mountain dew. He'll drink it and it's interesting but sometimes it will even make him sleepy. Can you imagine caffeine causing someone to fall asleep? It has something to do with the chemistry in the brain and how it works differently with someone with ADHD. I used to be on a list for families dealing with ADD/ADHD and over half of the moms on the list were dealing with each issue with their child that you mention. Anyway, just my thoughts. I hope you enjoy this group as much as I do. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.