Guest guest Report post Posted March 25, 2004 TJ, Start writing down now how EDS affects every single aspect of you daily life. From sleeping to waking moment in minute detail. For example, how hard it is to wash, toilet, bathe, dress, do chores, read, sit stand,watch tv, house bound, inability to drive or walk to a bus stop, It's all practically impossible due to pain ,weakness, etc. No hobbies, ya can't do them. Discuss who cooks or not ,very important. You use microwave stuff, someone else does your grocery shopping, someone else picks up your pain medications. You need to write quite a few pages no matter how hard this is, this is what will win your case with the law I gave you. Good Luck and Hugs! S. Re: > > > TJ, > No you will be OK! You won't pass out! Just take deep breaths and think of > comforting thoughts. Take your time when answering questions, think about > each question for a minute or so, ask for the question to be repeated. This > helps you organize your thoughts and responses. I wish you the best with the > new medications. When is the SSI hearing? > Hugs and Love, > S. > > > --- > Outgoing mail is certified Virus Free With AVG. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.614 / Virus Database: 393 - Release Date: 3/5/2004 > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 25, 2004 Dear Just to say thank you for your kind words. I am struggling to even get MRI scans of my knees (or any other joint to be honest). The NHS have told me they will not scan me to tell me where I have avn, they will simply replace the joints as they collapse! This is not really good enough for me having just spent so much money getting my hips sorted out. I saw my GP yesterday and he is referring me back to my rheumatologist in the hope that he will at least arrange an MRI of my left knee! The good news is that I got some stronger painkillers yesterday! At least my hips appear to be sorted out, for which I am so greatful! Love Lucy Mr Treacy Bilateral 20.08.03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 25, 2004 Dear Just to say thank you for your kind words. I am struggling to even get MRI scans of my knees (or any other joint to be honest). The NHS have told me they will not scan me to tell me where I have avn, they will simply replace the joints as they collapse! This is not really good enough for me having just spent so much money getting my hips sorted out. I saw my GP yesterday and he is referring me back to my rheumatologist in the hope that he will at least arrange an MRI of my left knee! The good news is that I got some stronger painkillers yesterday! At least my hips appear to be sorted out, for which I am so greatful! Love Lucy Mr Treacy Bilateral 20.08.03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 25, 2004 Dear Just to say thank you for your kind words. I am struggling to even get MRI scans of my knees (or any other joint to be honest). The NHS have told me they will not scan me to tell me where I have avn, they will simply replace the joints as they collapse! This is not really good enough for me having just spent so much money getting my hips sorted out. I saw my GP yesterday and he is referring me back to my rheumatologist in the hope that he will at least arrange an MRI of my left knee! The good news is that I got some stronger painkillers yesterday! At least my hips appear to be sorted out, for which I am so greatful! Love Lucy Mr Treacy Bilateral 20.08.03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 26, 2004 FAO Lucy Lucy You may be interested in the following. I have a knee injury – motorcycle accident – which does not show on x-rays. It was suggested that an MRI scan may show the damage there. The cheapest quote for an MRI scan of my knee in the UK was £560.00 (6 slice segments). The alternative I found was to have the MRI scan done in Trieste, Italy, for €180.00 (converted to GB pounds approx. £120.00). The return flight (including airport & passenger taxes) from Stansted using air cost me just under £24.00 (I’ve just checked on their web site and there are numerous flights in April and May costing £0.49 in each direction, plus taxes – so you can go there and back for under £25.00). You can do it all in two days – it could be done the same day but for the fact that air turn the plane round in 25 minutes and fly it back to Stansted. The booking system at the MRI centre is very smooth and reliable. You will be processed on the dot – at least that was my experience – and all will be over inside 2 hours including a written report (in Italian). You will get more than 24 ‘slices’ / segments of your knee. The same price and procedure apply for any joint to be MRI scanned. Contact me directly if you need more information (telephone no, address etc.). By the way, there is a free shuttle service from the airport in Trieste to the city centre which happens to end its journey across the road from the MRI centre. Within 500 m of the centre there are at least 3 hotels. You can rent a car at the airport for approx. £20.00 a day at the Trieste airport. I hope you’ll find this useful. Regards Dan * +44 (0)7974 981-407 * +44 (0)20 8501-2573 @ dan.milosevic@... _____ From: hollandlucy@... Sent: 26 March 2004 08:03 To: surfacehippy Subject: Re: Dear Just to say thank you for your kind words. I am struggling to even get MRI scans of my knees (or any other joint to be honest). The NHS have told me they will not scan me to tell me where I have avn, they will simply replace the joints as they collapse! This is not really good enough for me having just spent so much money getting my hips sorted out. I saw my GP yesterday and he is referring me back to my rheumatologist in the hope that he will at least arrange an MRI of my left knee! The good news is that I got some stronger painkillers yesterday! At least my hips appear to be sorted out, for which I am so greatful! Love Lucy Mr Treacy Bilateral 20.08.03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 14, 2004 AJ was born 3/7/01 with bilateral clubfeet and a onian translocation of the 13th and 14th chromosome which he inherited from me. At six months of age I noted that AJ was not reaching his milestones. The peds kept telling me it was because of the clubfeet. I have three other kids and knew better. By 9 months AJ was still not rolling over or lifting his head. I went against everyone who kept telling me he would be OK, including my husband and contacted EI to have him evaluated. They determined AJ needed PT and ST. Eventually we added OT and a teacher. I then began taking AJ to doctor's to try to find out what was wrong. We have been to see 5 neurologists, a developmental ped, psychologist, genetics, gastro, opthamology, and more. At age 3 AJ has just started to walk with use of a Rifton Pacer Gait Trainer (walker), can eat by himself (fingers only)and drink from a cup. He can not talk and does not have the motor skills for sign language. He can not stack blocks or put shapes in a shape sorter. He can put objects in a container, loves to look at books and push buttons, understands cause and effect and absolutely loves music. He just started preschool and seems to be enjoying himself. Medically he has hypotonia, mild PVL and some areas around his brain that aren't totally developed but according to every neurologist we have seen not significant enough to be causing his issues. He has had to many test for me to list them all here but so far everything has come back normal. This Friday we are going to see endocrinology to explore hormone levels as AJ is below the 5th percentile in both height and weight. Monday we are going to Dupont for an assisstive tecchnology eval to see if they can find something that AJ can use to help him communicate. Tomorrow he is scheduled for eye surgery to straighten his left eye which points in. Feel free to e-mail me directly and I would be happy to discuss more about AJ's issues and answer any questions that might help you with your daughter. Take care. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 14, 2004 AJ was born 3/7/01 with bilateral clubfeet and a onian translocation of the 13th and 14th chromosome which he inherited from me. At six months of age I noted that AJ was not reaching his milestones. The peds kept telling me it was because of the clubfeet. I have three other kids and knew better. By 9 months AJ was still not rolling over or lifting his head. I went against everyone who kept telling me he would be OK, including my husband and contacted EI to have him evaluated. They determined AJ needed PT and ST. Eventually we added OT and a teacher. I then began taking AJ to doctor's to try to find out what was wrong. We have been to see 5 neurologists, a developmental ped, psychologist, genetics, gastro, opthamology, and more. At age 3 AJ has just started to walk with use of a Rifton Pacer Gait Trainer (walker), can eat by himself (fingers only)and drink from a cup. He can not talk and does not have the motor skills for sign language. He can not stack blocks or put shapes in a shape sorter. He can put objects in a container, loves to look at books and push buttons, understands cause and effect and absolutely loves music. He just started preschool and seems to be enjoying himself. Medically he has hypotonia, mild PVL and some areas around his brain that aren't totally developed but according to every neurologist we have seen not significant enough to be causing his issues. He has had to many test for me to list them all here but so far everything has come back normal. This Friday we are going to see endocrinology to explore hormone levels as AJ is below the 5th percentile in both height and weight. Monday we are going to Dupont for an assisstive tecchnology eval to see if they can find something that AJ can use to help him communicate. Tomorrow he is scheduled for eye surgery to straighten his left eye which points in. Feel free to e-mail me directly and I would be happy to discuss more about AJ's issues and answer any questions that might help you with your daughter. Take care. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 You can take interstate 10 that's the speedy way or you can go down 90 which takes you through all the small towns. I prefer I 10. Oh yeah, then there's the road that goes along the coast......never been that way but I'm sure it's the most scenic. I don't know about Pensacola being beautiful though. The city is kinda old looking to me but I'm sure the beach is nice. I have never gone to the beach there......we always go to Destin......it's nice there too. The sand is pure white made mostly of quartz. Karol Karol I hear Pensacola is beautiful. Elton always talked about some road going into Pensacola. I'll have to ask him the name of it. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 You can take interstate 10 that's the speedy way or you can go down 90 which takes you through all the small towns. I prefer I 10. Oh yeah, then there's the road that goes along the coast......never been that way but I'm sure it's the most scenic. I don't know about Pensacola being beautiful though. The city is kinda old looking to me but I'm sure the beach is nice. I have never gone to the beach there......we always go to Destin......it's nice there too. The sand is pure white made mostly of quartz. Karol Karol I hear Pensacola is beautiful. Elton always talked about some road going into Pensacola. I'll have to ask him the name of it. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 Hey .......what do you do for a living? I have seen those lights you are talking about behind you. My husband isn't as lucky as I am. He gets the tickets. lol This was not funny. Mac was taking me to the emergency room one afternoon.....he was traveling kind of fast and all of a sudden FHP pulls up behind us. We stopped and hubby told the FHP we were on the way to the ER so he said he would follow us . When we got there I went inside and Mac talked to the cop. We had an Eclipse at the time and one just like ours was reported stolen would you believe.....that's why he pulled us over. Hard to believe since Mac must have been doing 80 in a 50 mph zone. Karol Deanna I had a trooper pass me when I was doing 85 on the thruway. I was driving the state van (no clients!!) and almost shit when I saw him coming up behind me! Don't need to loose my job! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 Yeah......problem is they don't know when to stop! Karol Karol I know he said they were just starting to build up the area when he left. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 Yeah......problem is they don't know when to stop! Karol Karol I know he said they were just starting to build up the area when he left. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 Yeah......problem is they don't know when to stop! Karol Karol I know he said they were just starting to build up the area when he left. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 That is so sad. These people need someone to care about them. Are there many people there in the home? Karol Karol Some of the guys at the house I work have no family at all. One has a dad who doesn't want any contact at all with him. Just wants to be notified when he dies. A couple have family that are there all the time. But for the most part, they have nobody who wants to be bothered with them. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 That is so sad. These people need someone to care about them. Are there many people there in the home? Karol Karol Some of the guys at the house I work have no family at all. One has a dad who doesn't want any contact at all with him. Just wants to be notified when he dies. A couple have family that are there all the time. But for the most part, they have nobody who wants to be bothered with them. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2004 That is so sad. These people need someone to care about them. Are there many people there in the home? Karol Karol Some of the guys at the house I work have no family at all. One has a dad who doesn't want any contact at all with him. Just wants to be notified when he dies. A couple have family that are there all the time. But for the most part, they have nobody who wants to be bothered with them. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 20, 2004 Betty, Cardiomyopathy is an enlargement of the heart. I do not believe this would lead to the tear in his aorta. But it would be best to ask a physician this. Best Wishes! S. > Hi all > I have another question for everyone. I am in the process of getting all of my son's medical records. I have just recieved & reviewed records from the pediatrician. Danny was on Ritalin first and then changed to Dexedrine (10mg) during his school days. He was probably on it for about 3 and a half years. In his records it stated that cardiomyopathy can occur while taking this.My question is could this have made his blood vessels weaker which in turn lead to his aortic tear. I know we have the EDS IV diagnosis but I do want to make sure that nothing was overlooked. > Thanks again. Any advice, comments would be appreciated. > Betty > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 20, 2004 Betty, Cardiomyopathy is an enlargement of the heart. I do not believe this would lead to the tear in his aorta. But it would be best to ask a physician this. Best Wishes! S. > Hi all > I have another question for everyone. I am in the process of getting all of my son's medical records. I have just recieved & reviewed records from the pediatrician. Danny was on Ritalin first and then changed to Dexedrine (10mg) during his school days. He was probably on it for about 3 and a half years. In his records it stated that cardiomyopathy can occur while taking this.My question is could this have made his blood vessels weaker which in turn lead to his aortic tear. I know we have the EDS IV diagnosis but I do want to make sure that nothing was overlooked. > Thanks again. Any advice, comments would be appreciated. > Betty > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 23, 2004 Please keep us posted on your tests. I hope your kidneys improve with the lowered methotrexate but I am real worried about your lungs. Anything they can do? Mojo Barb The dr called last night and I have to go in thursday morning to go over my test results. That's my pcp. And I know the rhuemy said he will be calling me about them too. I think I forgot to tell you that they have decreased the methotrexate as that leaves through the kidneys. I still haven't found the thing they want me to get for my elbow. It's called a silopos heel/elbow slipover. It's gel filled. You can't buy that on the puter, they do have some that you can, so they gave me the number to a place in Rochester and they don't have them. They have other silopos items, but not that one. They tried to sell me a cotton one, but I'd best stick to the one the dr said. I have to check on my refrerral, that hadn't been done when I checked yesterday. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 23, 2004 Please keep us posted on your tests. I hope your kidneys improve with the lowered methotrexate but I am real worried about your lungs. Anything they can do? Mojo Barb The dr called last night and I have to go in thursday morning to go over my test results. That's my pcp. And I know the rhuemy said he will be calling me about them too. I think I forgot to tell you that they have decreased the methotrexate as that leaves through the kidneys. I still haven't found the thing they want me to get for my elbow. It's called a silopos heel/elbow slipover. It's gel filled. You can't buy that on the puter, they do have some that you can, so they gave me the number to a place in Rochester and they don't have them. They have other silopos items, but not that one. They tried to sell me a cotton one, but I'd best stick to the one the dr said. I have to check on my refrerral, that hadn't been done when I checked yesterday. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 23, 2004 Hi, This is very sad. My kids have had to deal with this. First, a good friend of both my daughters died from an AVM. Just a week or so ago, a 13 year old boy from thier school died in a car accident. Last year, a boy from their school commited suicide. His father was abusive, and apparently locked him in a shed. The boy killed hisself in the shed. It was devistating to everyone. They have handled this ok, except for their good friend, 's, death. She lay in a coma for a week before she died. So, they had a little time to get used to it. But, when the call came, my was so devistated, she had to be medicated. I had 7 kids at my house that day for a vigil like thing. They all started hyperventilating, and feeding off each other. It was almost like mass hysteria. was the worst. She has anxiety anyway, and it was just horrible. I found I couldn't do anything but just be there. Most of the kid's parents worked, so the kids would come to my house just to be around people. I just fed them, and didn't do much talking at all. Just let them talk when they felt like it. Anything they did was fine. My got a box of " Sammi " stuff together, and it still sits on top of her dresser. Pictures, and stuff Sammy gave her. Even an old pair of pajama pants. I get very sad every time I go into 's room and look at it. After the funeral, everyone seemed to get better day by day. Sammi's picture has a permanent place on our refridgerator. I gotta get that into a frame. It was, and still is, the hardest thing for my kids to deal with. is best friends with Sammi's sister, and we see her and her mom all the time. Her mom will never be the same. She can't even talk without crying. It's been a year and 4 months. I don't think we'll ever get over it. Hugs, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 27, 2004 C., How are YOU this fine day? I couldn't sleep much last night, so am up early this a.m. Don't have to get the boys up for school for another hour, yet. Nice and quiet, and the air is much cooler this morning. I can't believe we have 90+ temps in April this year...and then it swings down to the 30's at night and we get hail. Not predictable at all lately. LOL Hope you are doing ok. I go in Friday morning for an ultrasound of my gall bladder area. I really don't think that is what is wrong, but I'll humor the docs on this one. LOL You take care, and keep on a-goin', as the late Hepburn used to say. Love and hugs, MM Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 27, 2004 Hey, you do what you gotta do! Sometimes you just have to eat something along with antibiotics. You eating any yogurt to keep the good bacteria up in your system? Karol Karol Hi! Yes I got them, thank you, I was all out! I'm not feeling too bad this morning. I've found if I eat when I take the antibiotic the dr gave me I don't get sick. Only thing is your not suppose to eat 2 hours before or 2 hours after. But it beats getting sick. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 29, 2004 thank you for saying that ! i got worried when you said nurse ! but kept reading , so i really hope your day outside , @hope its a good book lol , shirl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 29, 2004 Well, good luck to you. Hope your test today are better than the ones before. Hope you've been drinking a lot of water. Mojo Mojo Yea, I have to be there at 10:20 and I'll ask for a copy of them so I don't forget them. I looked at my chart when I went to the rhuemy's last week but after looking at all of them I forgot what it was. I remember there was one number over the other one and I checked the last two times they did it, but then I got to reading other stuff and forgot what the numbers were. So today I will ask for a copy! "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Share this post Link to post Share on other sites
