Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 If there is a place near you that will do it, look into a 3d ultrasound. Sometimes you have to pay an additional fee for the images, but see about getting the 3 dimensional images to take to a doctor. Thats what I did. I wanted to make sure it wasnt just a positional thing, and the idea of going half my pregnancy not knowing what to expect scared me. It really set me at ease and helped me to prepare for it. Jenn > > > Hi, > > I am new to the group so I will start with a little background info. > > My name is and I am 22 weeks pg. About a week and a half ago I > > had an ultrasound and the doc called and said that they thought the > > baby had clubfeet. I didn't know much about clubfeet so I didn't ask > > to many questions. I have a follow up ultrasound on Monday. I have > > been scouring the web and have gotten lots of good information. I > > have started a list of questions and have been looking at treatment > > options. I live in southern Minnesota and this is my second child. > > I have an almost 2 year old boy and a great husband. After I told my > > mom about the baby she said that when I was little I wore a brace for > > a while on my legs and she thought that clubfeet is what I had had. > > She said it wasn't a big deal and not to worry about it, but from > > everything I have read it sounds unlikely that my baby will get off > > so easily. I would love to get some feed back about what you all > > think. Ohh I have a cousin on my dad's side that was born with hip > > displacement that sounds like it is related to the clubfeet > > disorder. Do you have any suggestions on questions to ask my doc on > > Monday? > > TIA > > > > > > > > > <image.tiff> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 If there is a place near you that will do it, look into a 3d ultrasound. Sometimes you have to pay an additional fee for the images, but see about getting the 3 dimensional images to take to a doctor. Thats what I did. I wanted to make sure it wasnt just a positional thing, and the idea of going half my pregnancy not knowing what to expect scared me. It really set me at ease and helped me to prepare for it. Jenn > > > Hi, > > I am new to the group so I will start with a little background info. > > My name is and I am 22 weeks pg. About a week and a half ago I > > had an ultrasound and the doc called and said that they thought the > > baby had clubfeet. I didn't know much about clubfeet so I didn't ask > > to many questions. I have a follow up ultrasound on Monday. I have > > been scouring the web and have gotten lots of good information. I > > have started a list of questions and have been looking at treatment > > options. I live in southern Minnesota and this is my second child. > > I have an almost 2 year old boy and a great husband. After I told my > > mom about the baby she said that when I was little I wore a brace for > > a while on my legs and she thought that clubfeet is what I had had. > > She said it wasn't a big deal and not to worry about it, but from > > everything I have read it sounds unlikely that my baby will get off > > so easily. I would love to get some feed back about what you all > > think. Ohh I have a cousin on my dad's side that was born with hip > > displacement that sounds like it is related to the clubfeet > > disorder. Do you have any suggestions on questions to ask my doc on > > Monday? > > TIA > > > > > > > > > <image.tiff> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 , CONGRATS on your pregnancy!!! I found out at my 20 week u/s that my son, Zach would be born with unilateral right clubfoot. It was pretty obvious to even us when we went for the more in depth u/s (along with an echocardiogram to rule out heart issues) that his right foot turned in significantly in comparison to his left. As far as questions for your doc...they won't be able to tell you the severity until after your little one is born, so you don't need to ask that question. We went for an echocardiogram, because that is what our doctor ordered, so if your doctor doesn't suggest that, you may ask why, and if you should. You've come to the right place as far as seeking advice and reading research on the non-surgical Ponseti method. We drove from Michigan to Iowa City Summer/2002 to be treated by Dr. Ponseti himself (as many others on this list did as well). On Dr. Ponseti's website you will find a list of Ponseti certified doctors. Another gal on here who is also from Minnesota would definitely be a wonderful resource for you! Please feel free to email me privately if you have any questions you'd like in depth feedback on. I would LOVE to help. I was so blessed to have found this group when I found out Zach had clubfoot...I'd like to help others that same way! Again, congrats! Holly Zachary 7/27/02 Unilateral Right Clubfoot Treated by Dr. Ponseti 14 hrs/day DBB hollywasilewski@... > Hi, > I am new to the group so I will start with a little background info. > My name is and I am 22 weeks pg. About a week and a half ago I > had an ultrasound and the doc called and said that they thought the > baby had clubfeet. I didn't know much about clubfeet so I didn't ask > to many questions. I have a follow up ultrasound on Monday. I have > been scouring the web and have gotten lots of good information. I > have started a list of questions and have been looking at treatment > options. I live in southern Minnesota and this is my second child. > I have an almost 2 year old boy and a great husband. After I told my > mom about the baby she said that when I was little I wore a brace for > a while on my legs and she thought that clubfeet is what I had had. > She said it wasn't a big deal and not to worry about it, but from > everything I have read it sounds unlikely that my baby will get off > so easily. I would love to get some feed back about what you all > think. Ohh I have a cousin on my dad's side that was born with hip > displacement that sounds like it is related to the clubfeet > disorder. Do you have any suggestions on questions to ask my doc on > Monday? > TIA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hi Everyone, my name is also known as Mom22angels. I started putting questions up to the group, and I didn't even introduce myself. I am so sorry! I was so eager to just get some questions answered....anyway...Here is my story in short version.... A couple of years ago I started having vague symptoms like trouble breathing, extreme fatigue and trouble with my eyes. Things progressed and got a little worse, until 12/3/02 When I was in a pretty serious car accident. I required surgery on my neck to remove 2 disk and put in a steel plate (actually titanium) and I had to have surgery done to rebuild my shoulder. I also had " freaky brain " stuff going on that eventually was dxed as Post Concussion. All the symptoms fit the description, but I kept telling the Dr.s there was something more...they said I just didn't want to accept my DX. A year later, last September, I talked my PC into a chest xray because breathing was getting really bad again. Now mind you, I have a friend that has sarcoid, with no symptoms except she uses prednisone eye drops sometimes and she had trouble breathing just like I did one hot summer day. So I asked my PC, and she said it didn't sound like sarcoid to her. So the xray comes back clean. And I talk her into letting me see a pulmonologist that someone recommended. SHe had no idea what was wrong with me, but at least she believed me and kept trying anything we came up with. The pulmonologist said the Xray wasn't normal, the lungs were clear, but I had extreme involvment of my lymph system. He ordered a CT which he swore at the insurance company until they approved it, a week later I had a mediasteinoscopy (sp?) and a bronchial something. This Dx the sarcoid. I asked the pulmonologist about the neuro thing because of my symptoms. He said he didn't know anything about the neuro stuff .. but lets see what happens. After two monts of prednisone lesions that I had on my brain for the last two years were no longer visable. My thinking was clearer. I could multitask much better and I was even thinking about going back to work. Then I was in another car accident on 12/27/04. (neither one was my fault at all!) and I have re-injured my neck and my lower back this time. Boy was that phyically a big set back! Even more than just the injuries. So we were reducing the prednisone because the lymphnodes had also shrunk. I immediately had the brain stuff come back. Trouble with decision making, multi-tasking, balance, etc. So the pulmonologist DX me with Neuro Sarcoid based on that. He put my prednisone back up, but it isn't that high. I only take 40mg every other day. But the second I come down 10 mg. I notice it. But anyway, this group is a big help because no one around here seems to know about neuro sarcoid, although my pulmonlogist is great and is right on track about the lymph sarcoid ( I think, what do I know!) So that is my story. Oh yeah, I am a single mom with 2 little angels, both girls. One turned 5 last month, the other turns 8 on Easter. They have put up with a lot, and it looks like they still will. I am on SSDI from the " brain Injury " but I am up for review in May. I know it isn't a lot of money, but that is all I live on, so I hope I get renewed. I don't know if the one year review is as hard as it was to get it. That's my story and I'm sticking to it. In a shorter email I will talk more about what I liked to do and stuff... Thanks for listening, Mom22angels Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Oh, Sarcoidosis just burns itself out quickly. I will send you for a chest x-ray but I don't expect to see anything." So he sent me for a chest x-ray and two blood tests. When I returned for the follow-up he said, "Yes your lymph nodes are still enlarged but they will probably be that way for the rest of your life. The lymph nodes of people who have had Sarcoidosis remain permanently enlarged, but that doesn't mean that they still have the disease." Is this true? No. When sarcoidosis hits multiple systems, lungs, lymphs, eyes, muscles and ligaments, as well as the brain-- you fall out of the grace of this being a "benign" disease, to needing to find someone that understands that you have a serious form of sarcoidosis. Each additional flare means that the treatment needs to become more aggressive. Then he said that the two blood tests did not show any sign that there was Sarcoidosis in my body. I wish I could remember the names of these tests so that I could tell you all. This guy must know something we don't know-- but don't hold your breath. There are no blood tests that diagnose sarcoidosis. None. What he ran was a CRP (C-reactive protein and an ACE, Angiotensin converting enzyme test.) These are both tests that show inflammation in the system, and some MD's think they are getting a true picture when the levels are near normal. However, even a "normal" result may miss that you have systemic elements to your sarcoidosis. (enlarged lymphnodes). If the tests show any inflammation at all-- then you can bet that the sarc is still active. (You're on prednisone, correct?) Drugs also can make the test show normal- when it's not. Personally, I'd be finding another pulmonologist- this guy will wait until you're in severe crisis, and then want to put you back on prednisone. If you've done a round with it before, and then go into flare again-- it's time to pull out the other immuno-suppressants. Is an x-ray an adequate way to determine if the Sarcoidosis has disappeared or gone into remission?Not really. It may show whether there is anything new developing, but doesn't really address lymph involvement-- which is where you started. My Pulmonologist in New York wanted me to get an MRI every year. What do the group members think? Is a chest x-ray and two blood tests an ethical and adequate way to check on the status of my Sarcoidosis? Additionally, can a chest x- ray tell if my heart is being affected by the Sarcoidosis? It may show whether your heart is enlarged, which often happens with pulmonary sarcoidosis-- which then means that they need to do an EKG, and if you're showing signs of arrhythmia (rapid or irregular) heartbeat, then they may want to do a Trans-esophageal echo. TEE. (This is how we found out that it's my heart cusp -the part the valve closes into on the actual heart, that is screwed up instead of the valve being defective.) They are painless tests, and really help put stuff into perspective. What may be of bigger value to you would be a Gallium CT Scan of your lungs and bronchials. It should also show the lymphs. A couple of years ago when I first was diagnosed with Sarcoidosis I had what was diagnosed as "frozen shoulder". Now, I am having the same symptoms in the other shoulder. Also about the same time I was diagnosed as having "carpal tunnel syndrome". I am wondering if these could possibly be additional symptoms of Sarcoidosis and not just "frozen shoulder" or "carpal tunnel syndrome"?If the sarcoidosis is in the muscles and ligaments, it can definately mimic either of those problems. Also, if the sarcoid inflammation is in the blood stream itself, you can have a systemic inflammation that is thru your whole body. Many times we describe it as the inside of our bones hurting. Lately I have been feeling very light-headed and dizzy. Watch your blood sugar levels, as well as your blood pressure. Either of these get out of whack, and dizziness or light-headedness are signs that you need help. If you were short of breath at those times, it can be that the lymphs are pushing on the bronchials or lungs, and you're not getting enough oxygen. Remember that one of the major long-term side effects of prednisone is diabetes. Let me give you a couple of sites to check out. http://www.nationaljewish.org/medfacts/sarcoid.html http://www.jpgmonline.com/article.asp?issn=0022-3859;year=2002;volume=48;issue=2;spage=135;epage=41;aulast=Sharma http://www.nlm.nih.gov/medlineplus/ency/article/000720.htm This should give you a good start, and by printing these articles out, you will have them to use with your new MD's. Sincerely, Tracie Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Hi Rose, My 5 year old is Kurstin. Her father's name is Kurt. I have always liked the name Kurstin, but now I wish she wasn't named after her dad! My little one turning 8 on Easter is . The are very different kids, but they are both GREAT! I am very lucky to have them. I get very tired after about 2 hours, but I think if I didn't have them, I would be a lot worse off because I wouldn't be fighting so much. they are the reason I get up every morning and I love to go in their rooms after they are asleep and just brush their face or kiss them while they are peaceful! I hate what this disease is taking away, but I am very lucky for what I have! Thanks for asking about them. It is nice to talk about something positive. Mom22angels Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Hi Rose, My 5 year old is Kurstin. Her father's name is Kurt. I have always liked the name Kurstin, but now I wish she wasn't named after her dad! My little one turning 8 on Easter is . The are very different kids, but they are both GREAT! I am very lucky to have them. I get very tired after about 2 hours, but I think if I didn't have them, I would be a lot worse off because I wouldn't be fighting so much. they are the reason I get up every morning and I love to go in their rooms after they are asleep and just brush their face or kiss them while they are peaceful! I hate what this disease is taking away, but I am very lucky for what I have! Thanks for asking about them. It is nice to talk about something positive. Mom22angels Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Hi Rose, My 5 year old is Kurstin. Her father's name is Kurt. I have always liked the name Kurstin, but now I wish she wasn't named after her dad! My little one turning 8 on Easter is . The are very different kids, but they are both GREAT! I am very lucky to have them. I get very tired after about 2 hours, but I think if I didn't have them, I would be a lot worse off because I wouldn't be fighting so much. they are the reason I get up every morning and I love to go in their rooms after they are asleep and just brush their face or kiss them while they are peaceful! I hate what this disease is taking away, but I am very lucky for what I have! Thanks for asking about them. It is nice to talk about something positive. Mom22angels Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 Dear Tracie, Thanks for your response to my introduction. I want to let you know that I have found another Pulmonologist. This doctor is from Forest Park Hospital in St. Louis. During my appointment with him he showed me respect and listened carefully to what I had to say. Contrary to the last Pulmonologist who only sent me for a chest x-ray, this Pulmonologist is sending me this Monday for an MRI. He tells me that he has many patients with Sarcoidosis, and so hopefully he will be amenable to listening to information I have to share with him. Thank you for the links! I also have an appointment with a Neurologist soon. I will keep you and the group informed of the results of the tests and my progress. All the best, ce > Date: Mon, 21 Mar 2005 22:09:28 EST > From: tiodaat@... > Subject: Re: Introduction > > In a message dated 3/20/05 12:53:08 PM Pacific Standard Time, > drmljg@... writes: > > > > Oh, > > Sarcoidosis just burns itself out quickly. I will send you for a > > chest x-ray but I don't expect to see anything. " So he sent > > me for a chest x-ray and two blood tests. When I returned for the > > follow-up he said, " Yes your lymph nodes are still enlarged but > > they will probably be that way for the rest of your life. The lymph > > nodes of people who have had Sarcoidosis remain permanently > > enlarged, but that doesn't mean that they still have the > > disease. " > > Is this true? No. When sarcoidosis hits multiple systems, lungs, lymphs, > > eyes, muscles and ligaments, as well as the brain-- you fall out of the grace > > of this being a " benign " disease, to needing to find someone that understands > > that you have a serious form of sarcoidosis. Each additional flare means > > that the treatment needs to become more aggressive. Then he said that the two > > blood tests did not show any sign that there was Sarcoidosis in my body. I wish > > I could remember the names of these tests so that I could tell you all. This > > guy must know something we don't know-- but don't hold your breath. There > > are no blood tests that diagnose sarcoidosis. None. What he ran was a CRP > > (C-reactive protein and an ACE, Angiotensin converting enzyme test.) These are > > both tests that show inflammation in the system, and some MD's think they are > > getting a true picture when the levels are near normal. However, even a > > " normal " result may miss that you have systemic elements to your sarcoidosis. > > (enlarged lymphnodes). If the tests show any inflammation at all-- then you > > can bet that the sarc is still active. (You're on prednisone, correct?) Drugs > > also can make the test show normal- when it's not. > > > Personally, I'd be finding another pulmonologist- this guy will wait until > you're in severe crisis, and then want to put you back on prednisone. If you've > done a round with it before, and then go into flare again-- it's time to pull > out the other immuno-suppressants. > > > Is an x-ray an adequate way to determine if the Sarcoidosis has > > disappeared or gone into remission?Not really. It may show whether there is > > anything new developing, but doesn't really address lymph involvement-- > > which is where you started. My Pulmonologist in New York wanted me to get an MRI > > every year. What do the group members think? Is a chest x-ray and two blood > > tests an ethical and adequate way to > > check on the status of my Sarcoidosis? Additionally, can a chest x- > > ray tell if my heart is being affected by the Sarcoidosis? It may show > > whether your heart is enlarged, which often happens with pulmonary sarcoidosis-- > > which then means that they need to do an EKG, and if you're showing signs of > > arrhythmia (rapid or irregular) heartbeat, then they may want to do a > > Trans-esophageal echo. TEE. (This is how we found out that it's my heart cusp -the > > part the valve closes into on the actual heart, that is screwed up instead of > > the valve being defective.) They are painless tests, and really help put > > stuff into perspective. > > What may be of bigger value to you would be a Gallium CT Scan of your lungs > and bronchials. It should also show the lymphs. > > > > > A couple of years ago when I first was diagnosed with Sarcoidosis I > > had what was diagnosed as " frozen shoulder " . Now, I am having > > the same symptoms in the other shoulder. Also about the same time I > > was diagnosed as having " carpal tunnel syndrome " . I am > > wondering if these could possibly be additional symptoms of > > Sarcoidosis and not just " frozen shoulder " or " carpal > > tunnel syndrome " ?If the sarcoidosis is in the muscles and ligaments, it can > > definately mimic either of those problems. Also, if the sarcoid inflammation > > is in the blood stream itself, you can have a systemic inflammation that is > > thru your whole body. Many times we describe it as the inside of our bones > > hurting. Lately I have been feeling very light-headed and dizzy. Watch your > > blood sugar levels, as well as your blood pressure. Either of these get out > > of whack, and dizziness or light-headedness are signs that you need help. If > > you were short of breath at those times, it can be that the lymphs are > > pushing on the bronchials or lungs, and you're not getting enough oxygen. > > > Remember that one of the major long-term side effects of prednisone is > diabetes. Let me give you a couple of sites to check out. > > http://www.nationaljewish.org/medfacts/sarcoid.html > > http://www.jpgmonline.com/article.asp?issn=0022-3859;year=2002;volume=48;iss ue > =2;spage=135;epage=41;aulast=Sharma > > http://www.nlm.nih.gov/medlineplus/ency/article/000720.htm > > This should give you a good start, and by printing these articles out, you > will have them to use with your new MD's. > > Sincerely, > Tracie > Co-owner/moderator 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.