Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 > Thank you Steve. I started to read aromaland's blending ideas. Which esential oils are your favorites? > Hi ...well, the two main blends I'm working on right now are a citrus blend (love the bright, intense citrus scents, especially petitgrain...it's like being in an orchard), and a rose blend, though I'm still " visioning " the formula for that one; rose is so cool, and I'll make it " manly " with some patchouli and tobacco, maybe a touch of vetiver. I love clove, and what started me on blending was my sister making me a clove & sandalwood cologne, which was really good. I just got a bottle of clove bud absolute, and that stuff is muy muy bien! Intense and deep, just like whole cloves, and I almost smell a fruity port note or something in it! I can't wait to give it a test drive. I also just got a small bottle of tonka bean absolute; I'd never smelled tonka on its own before, and it's quite amazing...very rich and smooth, like vanilla mixed with almost a burnt almond or amaretto, kind of woody, and it has almost an antique smell about it, like an old varnished wood chest of drawers or something! I can see that a little of that goes a long way. Now all I have to do is knuckle down and do some experimenting! How about you...which oils are your favorites? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Hi , I'm Martha. My IM is rmremet1981. I would love to chat with you too. Hello > I would love to chat to you. I don't have Celiac and Microscopic > Colitis (and i don't even know what it is... how embarrassment) but i > will definatly be around to chat to. IM me on . My user name is > empress_tilly feel free to add me. That goes for anyone else too. > The more the merrier! > > > > > > My name is . I have Celiac and Microscopic Colitis. I am > just > > looking for people to talk to, and if anyone in this group also has > > CD/MC? > > I live in Michigan, 40 years old, seperated, no children. > > I was diagnosed in Feb of 2004. There is no one in my town that has > > this disease and the nearest support group is 80 miles away. > > > > Hope to meet you soon. > > > > Sam > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Being Sick Community > > > Message Archives-/messages > > Chat:- Scheduled Chats at > /chat > > Bookmarks:- > Add a website URL you have found useful. > /links > > Personal Complaints or problems:- > Please contact a moderator > email: -owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into groups at your convenience and receive no email. > > To modify your subscription settings please visit:- > /join > > To subscribe or unsubscribe please email:- > -subscribe > -unsubscribe > > This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician. > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > When nothing is sure, everything is possible. > > --- Margaret Drabble > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 steevo009 <airwaves99@...> wrote: > Thank you Steve. I started to read aromaland's blending ideas. Which esential oils are your favorites? > Hi ...well, the two main blends I'm working on right now are a citrus blend (love the bright, intense citrus scents, especially petitgrain...it's like being in an orchard), and a rose blend, though I'm still " visioning " the formula for that one; rose is so cool, and I'll make it " manly " with some patchouli and tobacco, maybe a touch of vetiver. I love clove, and what started me on blending was my sister making me a clove & sandalwood cologne, which was really good. I just got a bottle of clove bud absolute, and that stuff is muy muy bien! Intense and deep, just like whole cloves, and I almost smell a fruity port note or something in it! I can't wait to give it a test drive. <snip> Hi Steve, Your blends sound great! The tonka bean sounds lovely too. Is it a sensitizer? My favorite eos are Jasmine sambac, vanilla, sandalwood, rose maroc, Bulgarian rose otto, and neroli. I'd love to find a NP version of musk and amber. Are you using any of these substitutes and finding them good to use? All the best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Hi Billie, I also have the same things wrong with me on top of a few more to go with it. Would love to chat with you. ccupp2003@... or Im me at ccupp2003 on .I also have a blog on 360*. Come check it out. I am Connie a almost 50year old female in Tn. Connie Cupp Bring words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Welcome, Billie. Where in Texas are you from? My grandmother was born and raised not far from San and I still have relatives near Waco and San . Baltimore County Paranormal Research www.baltimoreparanormal.com Eastern Regional Paranormal Conference July 21 - 23, 2006 http://conference.marylandparanormal.com -- " gramdone2 " <GRAMDONE2@...> wrote: Hello everyone I am Billie a 54 year old female from Texas.I have osteoarthritis in both of my knees and degenerative disk and joint disease in my lower neck c-4 ,c-5,c-6. I hope to meet some of you soon and hopefully make friends here . Thank you Billie ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick Community Message Archives-/messages Chat:- Scheduled Chats at /chat Bookmarks:- Add a website URL you have found useful. /links Personal Complaints or problems:- Please contact a moderator email: -owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into groups at your convenience and receive no email. To modify your subscription settings please visit:- /join To subscribe or unsubscribe please email:- -subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician. ~~~~ *** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible. --- Margaret Drabble ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 > > > > My name is . I have Celiac and Microscopic Colitis. I am > just > > looking for people to talk to, and if anyone in this group also has > > CD/MC? > > I live in Michigan, 40 years old, seperated, no children. > > I was diagnosed in Feb of 2004. There is no one in my town that has > > this disease and the nearest support group is 80 miles away. > > > > Hope to meet you soon. > > > > Sam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Sounds Great Martha, always can use new freinds. Hope to talk to you too, I added you to my . > > > > > > My name is . I have Celiac and Microscopic Colitis. I am > > just > > > looking for people to talk to, and if anyone in this group also has > > > CD/MC? > > > I live in Michigan, 40 years old, seperated, no children. > > > I was diagnosed in Feb of 2004. There is no one in my town that has > > > this disease and the nearest support group is 80 miles away. > > > > > > Hope to meet you soon. > > > > > > Sam > > > > > > > > > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Being Sick Community > > > > > > Message Archives-/messages > > > > Chat:- Scheduled Chats at > > /chat > > > > Bookmarks:- > > Add a website URL you have found useful. > > /links > > > > Personal Complaints or problems:- > > Please contact a moderator > > email: -owner > > > > Subscription Details:- > > 1) Individual email - means that every email sent to the list you receive. > > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > > 3) Web only/No mail - means that you can pop into groups at your > convenience and receive no email. > > > > To modify your subscription settings please visit:- > > /join > > > > To subscribe or unsubscribe please email:- > > -subscribe > > -unsubscribe > > > > This group is not intended to diagnose or treat illnesses. No one on this > group is qualified to diagnose medical conditions. If you feel you need > medical attention, seek the advice of a qualified physician. > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > When nothing is sure, everything is possible. > > > > --- Margaret Drabble > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 At 05:26 AM 1/26/2006, you wrote: > > Thank you Steve. I started to read aromaland's blending ideas. >Which esential oils are your favorites? > > >Hi ...well, the two main blends I'm working on right now are >a citrus blend (love the bright, intense citrus scents, especially >petitgrain...it's like being in an orchard), and a rose blend, >though I'm still " visioning " the formula for that one; rose is so >cool, and I'll make it " manly " with some patchouli and tobacco, >maybe a touch of vetiver. How about tonka? I adore tonka as a base for rose. >I love clove, and what started me on blending was my sister making >me a clove & sandalwood cologne, which was really good. I just got >a bottle of clove bud absolute, and that stuff is muy muy bien! >Intense and deep, just like whole cloves, and I almost smell a >fruity port note or something in it! I can't wait to give it a test >drive. Oy, be careful with the clove bud - very sensitizing. >I also just got a small bottle of tonka bean absolute; I'd never >smelled tonka on its own before, and it's quite amazing...very rich >and smooth, like vanilla mixed with almost a burnt almond or >amaretto, kind of woody, and it has almost an antique smell about >it, like an old varnished wood chest of drawers or something! I can >see that a little of that goes a long way. Now all I have to do is >knuckle down and do some experimenting! Whoa, pays to read the entire post before replying. I dilute mine down to 5% or less. You can also buy tonka beans, powdered, and make your own, or liathris, which smells very similar. Love the coumarin-containing scents. Sweet woodruff, melilot, etc., etc. >How about you...which oils are your favorites? All the florals, coumarins, citrus, woods, oh, heck, it's easier to list the ones I don't like: clove, cinnamon, cumin, massoia, hops, cognac. Of course, I use some of them, because a perfumer has to know that you must get past your dislike of single scents to see the magic that occurs, the alchemy, when blended with other oils. I used to hate ylang, really hate it, and now I use it freely, knowing the way it glides and marries with other florals, especially. But I still dislike when I have to sniff a new sample of the straight stuff for evaluation: I get it over quickly, then plan its future, disguised in a blend ;-) Anya http://.com The premier site on the Web to discover the beauty of Natural Perfume / Join to study natural perfumery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Hi - If indeed you do have SMA - your neurologist does NOT need to do a biopsy. A genetic test requiring only a blood draw is all that is needed to confirm such a diagnosis. Possibly an EMG as well (but even that should not be necessary). Ask your neurologist about running the proper genetic test before allowing them to cut into your body. Mitch PS-Prior to my son being diagnosed, he'd had an EMG done - because the doctors thought they'd performed the genetic test (but in actuality had NOT) - and then, they recommended a biopsy - which since it is no longer necessary with more accurate genetic testing is really quite barbaric - until my wife pushed them for the genetic test results - of which they could not locate & had to admit they made a mistake, etc. I'm quite thankful my son did not have to have a biopsy performed - but am still quite pissed off he had to endure the EMG. --- <laotianrose@...> wrote: > Hi everyone, my name is and I'm 21 and there > is a very real possibility that I have Type 3 Spinal > Muscular Atrophy. When I was 11, I was misdiagnosed > with Syringomyelia. I have all of the symptoms and > motor skill problems but my neurologist must do a > biopsy to be sure. More than likely, I do have SMA. > I can stand up on my own but with extreme > difficulty when I'm sitting on the floor. My > shoulders are not very functional, I have much > difficulty in raising my outstretched arms up to my > chest or higher. I'm also quite talkative so I hope > someone else here is too. > > > > Sincerely, > R. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 neurologist does NOT need to do a biopsy. A genetic test requiring only a blood draw is all that is needed to confirm such a diagnosis. Possibly an EMG as well (but even that should not be necessary). He is 100% correct. I had biopsy and 5 EMG's I am still numb in my leg were the biopsy was done and the EMG's suck. The DNA test is all they need. I am type III and was mis diagnosed many times at 8 years old we started trying to find out what the problem was and got it figured out at 30. I could try and answer any questions you have also if I can help let me know. E-mail or through the group either way. Good luck I hope it all works out for you. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 I'm on a gov't funded healthcare system called IEHP. I've had the genetic tests done, there isn't anything overtly SMA, so it may be very hard to trace. I was also tested for all forms of Dystrophy and the tests came back negative. I've also had an MRI. Honestly, I have all of the signs and symptoms of SMA type 3. I don't mind getting a biopsy, I just want to know what I have. I know the biopsy will be painful but I need to know and the blood tests are elusive. There may be some blood tests that medi-cal/IEHP is just not willing to pay for, and I can't control that. I'm going through with the biopsy. I was misdiagnosed once, I don't want to be again. Even if the biopsy doesn't say SMA, it may clarify something else. I've waited long enough for the truth. <mongomustgolf@...> wrote: Hi - If indeed you do have SMA - your neurologist does NOT need to do a biopsy. A genetic test requiring only a blood draw is all that is needed to confirm such a diagnosis. Possibly an EMG as well (but even that should not be necessary). Ask your neurologist about running the proper genetic test before allowing them to cut into your body. Mitch PS-Prior to my son being diagnosed, he'd had an EMG done - because the doctors thought they'd performed the genetic test (but in actuality had NOT) - and then, they recommended a biopsy - which since it is no longer necessary with more accurate genetic testing is really quite barbaric - until my wife pushed them for the genetic test results - of which they could not locate & had to admit they made a mistake, etc. I'm quite thankful my son did not have to have a biopsy performed - but am still quite pissed off he had to endure the EMG. --- <laotianrose@...> wrote: > Hi everyone, my name is and I'm 21 and there > is a very real possibility that I have Type 3 Spinal > Muscular Atrophy. When I was 11, I was misdiagnosed > with Syringomyelia. I have all of the symptoms and > motor skill problems but my neurologist must do a > biopsy to be sure. More than likely, I do have SMA. > I can stand up on my own but with extreme > difficulty when I'm sitting on the floor. My > shoulders are not very functional, I have much > difficulty in raising my outstretched arms up to my > chest or higher. I'm also quite talkative so I hope > someone else here is too. > > > > Sincerely, > R. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 You have come to the right place! *L* I think you'll find some great support here. Let us know what your tests results show. Lori --- <laotianrose@y...> wrote: I'm also quite talkative so I hope someone else here is too. > > > > Sincerely, > R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Great advice, Mitch! Lori wrote: > Hi - If indeed you do have SMA - your > neurologist does NOT need to do a biopsy. A genetic > test requiring only a blood draw is all that is needed > to confirm such a diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 >Anya <mccoy@n...> wrote: > How about tonka? I adore tonka as a base for rose. Thanks for the tip...I'll experiment with tonka, as I haven't blended with it yet. I can see how tonka might be a good fit with rose, whereas darker tones like patchouli and tobacco might take it in another direction and might detract from rose's " emotional brilliance. " I guess it's all in the number of drops a person uses, so I'll give it a go. > >I just got a bottle of clove bud absolute...I can't wait to give > >it a test drive. > > Oy, be careful with the clove bud - very sensitizing. Thanks for the warning. I'll have to do some checking to refresh my memory as to what the maximum amount is that I can get away with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Hi ! Welcome to the group! My son PJ has been seen at NIH for about 4 years now, at least once every 6 months. What happens after the testing at NIH depends on a few factors. Usually about 3 months or so after the tests, you should get results. If your child winds up with a diagnosis of one of the genetic disorders, NIH may take him on as a patient. That would mean that you go back on a regular basis for follow up or, if you have a good doctor at home that is willing to take care of your child THROUGH NIh, then you might consider that. Then he would do follow up labs and care with guidance from NIH. You have to consider where you live, how disruptive the trip every 6 months will be for your family... What you saw about interleukin is for a specific disorder and only for adults! (I read the protocol!) NIH, you will find, does NOT expirement on kids.The therapies that they use on kids have been tried and been found to be effective in most cases. They WILL experiment on adults, I believe! One thing that impressed me so much about NIH is somethings that Dr. Kastner said to me a couple of years ago and that was that he would not leave a suffering child untreated. We were talking about my former pediatrician, he said that even if a doc does not know what he is dealing with, at the very least he has to be willing to treat the symptoms. Give him something to help him stop throwing up, order IV fluids if he's getting dehydrated, etc. I think that he makes sure that each child he sees is taken care of, if not by them then by a local doc. I don't think that there is anyone here who can say that they regretted the NIH experience. For most of us, it has been a lifesaver, after many years of struggling. Pat, mom to PJ, 13yo, Clinical FMF, Virginia --------------------------------- Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Hello Pat My name is Sacora, I am curious it says your son has FMF right? I went and seen Dr.Kastner in 11/2002 for periodic fever syndrome. They think I have probable FMF but not for sure I take colchine everyday since I have seen them and has less attacks by being on it. I have not been back since then and have heard nothing from Dr.Kastner. So how was your son diagnosed? Was it a positive gene factor? My IgD level is elevated and still is lately I have been starting back in with my attacks. I don't know if your body gets immune to the medicine if you will have attacks more often again or what. I have a son that his infection disease doctor says he has . He is sick all the time. He looks fragile. Any information you may have on things could you let me know that would be great. Thanks Sacora Bombardier <petish44@...> wrote: Hi ! Welcome to the group! My son PJ has been seen at NIH for about 4 years now, at least once every 6 months. What happens after the testing at NIH depends on a few factors. Usually about 3 months or so after the tests, you should get results. If your child winds up with a diagnosis of one of the genetic disorders, NIH may take him on as a patient. That would mean that you go back on a regular basis for follow up or, if you have a good doctor at home that is willing to take care of your child THROUGH NIh, then you might consider that. Then he would do follow up labs and care with guidance from NIH. You have to consider where you live, how disruptive the trip every 6 months will be for your family... What you saw about interleukin is for a specific disorder and only for adults! (I read the protocol!) NIH, you will find, does NOT expirement on kids.The therapies that they use on kids have been tried and been found to be effective in most cases. They WILL experiment on adults, I believe! One thing that impressed me so much about NIH is somethings that Dr. Kastner said to me a couple of years ago and that was that he would not leave a suffering child untreated. We were talking about my former pediatrician, he said that even if a doc does not know what he is dealing with, at the very least he has to be willing to treat the symptoms. Give him something to help him stop throwing up, order IV fluids if he's getting dehydrated, etc. I think that he makes sure that each child he sees is taken care of, if not by them then by a local doc. I don't think that there is anyone here who can say that they regretted the NIH experience. For most of us, it has been a lifesaver, after many years of struggling. Pat, mom to PJ, 13yo, Clinical FMF, Virginia --------------------------------- Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Hello Sacora! My son has been diagnosed with 'Clinical' FMF. That means that Dr. Kastner is convinced that PJ has FMF even though so far they have found none of the known mutations in him. He has responded very well to the Colchicine which is another indicator for FMF. You know, if you have been on Colchicine for the past few years and it has helped and now your son has these periodic fevers, to me personally, that just screams out FMF for your son. Have you tried to get him into the fever study? I would do so as soon as possible, if only to be tested. I'll bet that since NIH has tested you and found you to be probable FMF, Dr. Kastner would be very interested in seeing your son. Has he ever tried Colchicine? If you do try to get him into the study and find that you will have to wait a few months to get in, maybe you could see if one of his docs would be willing to try Colchicine for him. I don't believe that you can " get immune " to the Colchicine but I know that for my son, he has periods where it is not as effective for him as others. The episodes try to come back more often or a little stronger. I think that that is just the nature of the disease. He too, is still growing and as he does, he needs to have his dose increased. I wish I could be of more help! As I said, I think that you both need to go be seen at NIH, he to be tested and you to be followed up on. I want to be able to say, 'go ahead, call Nicky, she'll help guide you', but if you've been reading previous posts, it may not be that simple. Try! Good luck. Pat --------------------------------- Bring words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Hi again : Sorry for the many misdiagnoses and your frustration with the lack of test results thus far. But, again, a biopsy won't necessarilly get you accurate results. Regarding the genetic test for SMA - there IS nothing overt about the test results if the correct test is performed - the results are quite specific - if you have SMA, a homozygous SMN1 deletion of chromosomes 5 Q 13 will be noted - very specific. The genetic test for SMA is no more expensive than any other - out of pocket cost (though most insurance companies will pay for this) is probably somewhere between $300 & $500. For the record, if IEHP is willing to pay for the biopsy and all associated costs - AND not the genetic test (which is far less expensive) - then IEHP are a bunch of morons. Before you go through with the biopsy I would very much recommend you ask your neurologist point blank - did they run the SMA genetic test?!? Also, it is important that IEHP - government based or not, is afterall still part of the EVIL EMPIRE (Health Insurance Companies) - and their prime goal is to STICK it to all of its insureds. Push the bastards if they actually denied the test (which I really doubt they would) - I'm willing to bet (based on my personal experience with my son) - that your neurologist simply did not have the correct test performed. Finally, last but not least, if you are intent on having the biopsy performed - make sure the least invasive technique is performed. I don't recall all that is involved - but we looked into all the various nuances when we thought that's what we were going to have to do for our son ( & again, Thank God we did not have to) - but there are techniques that involve a much smaller incision - perhaps the terms were horizontal versus vertical - I don't really recall - but someone in this group may know. Or check one of the SMA websites - under the resources/help area - look up all you can on biopsies. Remember, YOU are your number 1 healthcare advocate - NOT your doctor, and certainly NOT your insurance company! Good luck - Mitch --- <laotianrose@...> wrote: > I'm on a gov't funded healthcare system called IEHP. > I've had the genetic tests done, there isn't > anything overtly SMA, so it may be very hard to > trace. I was also tested for all forms of Dystrophy > and the tests came back negative. I've also had an > MRI. Honestly, I have all of the signs and symptoms > of SMA type 3. I don't mind getting a biopsy, I > just want to know what I have. I know the biopsy > will be painful but I need to know and the blood > tests are elusive. There may be some blood tests > that medi-cal/IEHP is just not willing to pay for, > and I can't control that. I'm going through with > the biopsy. I was misdiagnosed once, I don't want > to be again. Even if the biopsy doesn't say SMA, it > may clarify something else. I've waited long enough > for the truth. > > > > <mongomustgolf@...> wrote: > Hi - If indeed you do have SMA - your > neurologist does NOT need to do a biopsy. A > genetic > test requiring only a blood draw is all that is > needed > to confirm such a diagnosis. Possibly an EMG as > well > (but even that should not be necessary). Ask your > neurologist about running the proper genetic test > before allowing them to cut into your body. Mitch > > PS-Prior to my son being diagnosed, he'd had an EMG > done - because the doctors thought they'd performed > the genetic test (but in actuality had NOT) - and > then, they recommended a biopsy - which since it is > no > longer necessary with more accurate genetic testing > is > really quite barbaric - until my wife pushed them > for > the genetic test results - of which they could not > locate & had to admit they made a mistake, etc. > I'm > quite thankful my son did not have to have a biopsy > performed - but am still quite pissed off he had to > endure the EMG. > > --- <laotianrose@...> wrote: > > > Hi everyone, my name is and I'm 21 and > there > > is a very real possibility that I have Type 3 > Spinal > > Muscular Atrophy. When I was 11, I was > misdiagnosed > > with Syringomyelia. I have all of the symptoms > and > > motor skill problems but my neurologist must do a > > biopsy to be sure. More than likely, I do have > SMA. > > I can stand up on my own but with extreme > > difficulty when I'm sitting on the floor. My > > shoulders are not very functional, I have much > > difficulty in raising my outstretched arms up to > my > > chest or higher. I'm also quite talkative so I > hope > > someone else here is too. > > > > > > > > Sincerely, > > R. > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 My Biopsy was negative it told doctors nothing. I also showed problems with all my EMG's but the DNA test was proof positive and didn't hurt like the others. I have been misdiagnosed with Marfans Syndrome to Arthritis and Limp Girdle, MD. I was told by 2 different MDA Clinics I didn't have any form of M/D or anything like it. The 2 ND MDA Clinic ordered a spinal tap-EMG and another MRI when I finally said enough and went to the Mayo Clinic out of network and got the right test and diagnoses and it cost me over 3 grand out of pocket. The bottom line is it was worth it to finally know for sure with a DNA test but it took 22 years to find out and many doctors that had no clue. The first I ever heard of SMA was at the Mayo Clinic. Good luck but like Mitch said you are your best advocate. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 <mongomustgolf@...> wrote: Actually the test was performed a few times because the first time my lab drew the blood in the wrong tubes (containing the wrong chemicals) and then sent it to the main lab which is too far away and it turned out the labs don't even use the same codes for theirs tests abd test tubes, but the confusion was fixed... I was adamantly reassured by my neurologist. My nuerologist also mentioned myopathy... but frankly everything I've read about sma matches what i've gone through my whole life. It was my decision as an adult to get a new diagnosis in the first place because I figured out the first one just didn't jive. Sincerely, R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 hi emily, i have 2 sma type 1 children, so i'm sorry that i don't have much advice for your dilemmas. i noticed that you're near us in san bernardino county, we use loma linda. our neuro there is dr. ashwal and he's wonderful, i know he follows a couple of sma families. we go to the home mechanical ventilation (hmv) clinic at loma linda and they're knowledgeable about sma too. so i just thought i would let you know in case you decide to ever use them. good luck! always, ruthie please visit henry kids sma website: _Kaelan & Karlie's Website!_ (http://www.our-sma-angels.com/kaelanandkarliehenry/index.htm) ~ " there are only two ways to live your life. one is as though nothing is a miracle. the other is as though everything is a miracle. " ~ _albert einstein_ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Hi : What state do you live in? Utah sends all of their their blood samples to Columbus, OH. Perhaps your neurologist needs to speak with someone more familiar with SMA - there are very knowledgable SMA docs on both coasts & in between. Our first neurologist - was also quite adamant that our son needed to have a biopsy performed - and assured us the genetic test had been performed. Upon pushing him for the official results of the test, he realized he was in error. This particular doc was a very well respected ( & still is) neurologist - but his specialty was mostly with autism and mitochondrial diseases. He knew textbook BS about SMA from 30 years ago. Anyway, my point, is we pushed him - and ended up seeing another neurologist - one that had more current knowledge on SMA - and also see another one who is known for his specialty with SMA. Based on the snafus you mentioned below in what is pretty basic neurology/lab testing stuff, as well as your lack of a resolute diagnosis and at the least an issufficient diagnosis matching your life's experience - maybe its time to get a new doc.?. Aside from many well regarded and knowledgable docs on SMA - there are many decent MDA clinics across the country who should be able to assist you in determining if you have SMA much quicker and precisely than perhaps through a muscle biopsy...name your location and I'd bet there are folks on this list who can name pretty decent docs that you could at least inquire about... Mitch --- <laotianrose@...> wrote: > > > <mongomustgolf@...> wrote: > > Actually the test was performed a few times because > the first time my lab drew the blood in the wrong > tubes (containing the wrong chemicals) and then sent > it to the main lab which is too far away and it > turned out the labs don't even use the same codes > for theirs tests abd test tubes, but the confusion > was fixed... I was adamantly reassured by my > neurologist. My nuerologist also mentioned > myopathy... but frankly everything I've read about > sma matches what i've gone through my whole life. > It was my decision as an adult to get a new > diagnosis in the first place because I figured out > the first one just didn't jive. > > > > Sincerely, > R. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 My neurologist was NOT adamant about the biopsy, but he was adamant about the genetic tests. He left the biopsy to me, he said it's up to me if knowing what I have is worth the inconvenience of a biopsy. I told him it was. He is in no way forcing me to do this. The main lab he used was Athena lab somewhere in San Bernardino County. I live in Riverside County, so it would have been difficult for me to get there with no vehicle of my own. So my neurologist allowed me to go to my local lab to have the blood sent to Athena labs. He was able to rule out dystrophy, and dystrophy was also found to be negative when I was a child. Whatever I have, it's not dystrophy. And actually, even though all SMA is linked to a genetic defect, not all of the cases are linked to the SAME genetic defect. I've read many articles written by neurologists and they say the expression and severity differ from patient to patient. My family history is probably quite complex as my biological maternal grandparents were given up for adoption during the 1930's and the only thing I know about my father is that he was from Laos. But I want to make it clear that I'm not being forced into getting a biopsy, I am choosing this. I'm sorry if I sound harsh or like a broken record, but what I had hoped to get from this group was day to day advice on living with SMA, on getting through daily tasks and minimizing muscle damage. If it's okay with , at least when messages are directed at me, I'd prefer to talk about those things. I have at least 2 good neurologists working in my town and I'd prefer to get specific advice from them concerning tests, biopsies, and results. I also have loma linda here to help if diagnoses prove's to be too much for my neurologist. <mongomustgolf@...> wrote: Hi : What state do you live in? Utah sends all of their their blood samples to Columbus, OH. Perhaps your neurologist needs to speak with someone more familiar with SMA - there are very knowledgable SMA docs on both coasts & in between. Our first neurologist - was also quite adamant that our son needed to have a biopsy performed - and assured us the genetic test had been performed. Upon pushing him for the official results of the test, he realized he was in error. This particular doc was a very well respected ( & still is) neurologist - but his specialty was mostly with autism and mitochondrial diseases. He knew textbook BS about SMA from 30 years ago. Anyway, my point, is we pushed him - and ended up seeing another neurologist - one that had more current knowledge on SMA - and also see another one who is known for his specialty with SMA. Based on the snafus you mentioned below in what is pretty basic neurology/lab testing stuff, as well as your lack of a resolute diagnosis and at the least an issufficient diagnosis matching your life's experience - maybe its time to get a new doc.?. Aside from many well regarded and knowledgable docs on SMA - there are many decent MDA clinics across the country who should be able to assist you in determining if you have SMA much quicker and precisely than perhaps through a muscle biopsy...name your location and I'd bet there are folks on this list who can name pretty decent docs that you could at least inquire about... Mitch --- <laotianrose@...> wrote: > > > <mongomustgolf@...> wrote: > > Actually the test was performed a few times because > the first time my lab drew the blood in the wrong > tubes (containing the wrong chemicals) and then sent > it to the main lab which is too far away and it > turned out the labs don't even use the same codes > for theirs tests abd test tubes, but the confusion > was fixed... I was adamantly reassured by my > neurologist. My nuerologist also mentioned > myopathy... but frankly everything I've read about > sma matches what i've gone through my whole life. > It was my decision as an adult to get a new > diagnosis in the first place because I figured out > the first one just didn't jive. > > > > Sincerely, > R. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Dr. Ashwal huh? I'm supposed to be transferring from Riverside Community College to Cal-State San Bernardino for the fall, at which point I've decided to live on campus in San Bernardino, so maybe if my Riverside neurologist hasn't figured this out before I transfer, then I can get IEHP to assign me to Ashwal. Sincerely, R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 , You have happened upon a very opinionated group of people. You may get advise you didn't ask for sometimes but it is given with the best of intentions. Just ignore what isn't helpful and benefits from things you thing might help you. I think people just didn't want you to go through a procedure you may not need. Sounds like you have given your options much consideration and, of course, we respect your decision. Please let us know what you find out. Lori wrote: > > I'm sorry if I sound harsh or like a broken record, but what I had > hoped to get from this group was day to day advice on living with SMA, > on getting through daily tasks and minimizing muscle damage. Quote Link to comment Share on other sites More sharing options...
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