Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 hi amy; thanks for your response... as far as i know i don't have mito... a few years ago (when orion was still alive), some of his doctors as well as a geneticist mentioned that there was a possibility i could develop some mito problems. about a year or so ago i started having some relatively minor problems-- mainly unexplained pain in my back, legs and knees... also a lot of ear infections over the past couple years, which have damaged my hearing (for some reason i don't really feel the pain in my ears until the infection is so bad blood starts coming out-- sorry to be so gross). i haven't had an ear infection since about april (*knock on wood*), but the problems with pain have been getting increasingly worse... also been getting a lot headaches, abdominal pain, and having some trouble with keeping my blood sugar up... one day about a month ago i woke up and realized that my finger and part of my hand were numb, and my neck, shoulder, and upper arm were very sore-- the only way i can really describe it is to say it felt like i had run full-speed into a wall or something. took me almost a week to get in to see the doctor (her office hours are really crappy-- 9am to 12 noon-- i was working in a lab, and had to arrange with them to leave early one day)... she kind of acted like i was making it up or something, and gave me some muscle relaxers (which honestly, i only take when i absolutely have to, because they knock me out and i hate it) and rx strength motrin. the pain got worse, the numbness is still there, and now my wrist is hurting too... i went back to see her and finally she is sending me for the emg on my arm... sorry this is so long... i am always hesitant to write anything here, because orion isn't here anymore, and there really isn't anything helpful i can contribute to anything... i am just so frustrated with my doctor-- it's so hard to even get antibiotics from her when i get things like respiratory infections (which i usually get several times a year, and they last for weeks) or ear infections-- things that she can just look at or whatever and be able to see something is wrong. i don't know what to do about the pain that is always in my back and legs-- it feels like my legs are on fire or something... i don't know how to explain it. also, sometimes my feet go numb and i don't know why... i am afraid to bring this stuff up to my doctor because half the time she acts like i am crazy when i am sick, and i don't know how to explain to her about the pain that's there for no reason. i know i need to find a new doctor, but i've been hesitant to do that, because she has been my doctor for years and knows my medical history, as well as orion's... hopefully the emg will give me some answers (she said it was to test for nerve damage), and maybe i can go from there... sorry this is so long-- i guess i just don't really have anyone to talk to about things like this, and maybe i just needed to vent... i feel so frustrated and scared... julia orion's mommy p.s. thank you for your prayers... chris and i were just talking the other day, wondering what orion would have had on his birthday cake for his 4th birthday-- i was voting for spiderman I think they stick an electric current in your muscle. I'm not 100% sure. Let us know if it is painful and what the results are. Do you have any other symptoms of mito? I remember Orion. I'll say a prayer for him on what would have been his 4th B-day, next week. Amy (mom to , PDH) Orion's Mommy Orion's Page http://www.angelfire.com/ri/orion1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 , you sound like you really needed to vent. prayers going your way. Orion im sure is watching over you, luv the name. my advice, get a new dr. i know its hard to do but if your dr isnt listening to you or taking you seriously you need to switch, your new dr can get all of your records. I wish you the best of luck luv , hailees mom undiagnosid mito Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 I had an emg when I was 20 (have fibromyalgia and couldn't walk from pain for a couple weeks) and it was not a fun test...darlene's description was pretty accurate. The rods are like flexible needles that they kinda manipulate to get a reading. They used them with me but I don't know where they draw the line of using them or not, you know? deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Feel free to vent anytime. It does sound like a new doctor is in order. I was impressed to hear Dr Cohen say at the conference...if your doc is not working with/for you then get a new one...I thought it was nice to hear a doc say that himself! Spiderman sounds about right...my middle son will be 4 in January and he loves Spiderman (altho he has never seen the movie or anything)! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Good Morning , An emg tests the muscles with electrical current. It looks like 2 minature battery cables that is hooked from one end of the muscles to the other end. The doctor will let you and your child feel the current being used with your fingers. It has a tingleling feeling. When the current is sent through the muscles, the response from the muscle is printed on a graph paper. Sometimes a metal rod like a needle is put into the muscle. It is my understanding that the neurologist is the one that administers the test. Ask you hospital to send a pamphlet or go on line to www.teleemg.com see what an emg involves. Also, where the numbness and pain is located, has the doctor ruled out your heart? This is one of the symptoms. Good Luck. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hi again Amy, Responded before reading your second post. I truly believe in my heart that the spirit of Orion is always with you. You have a lot to contribute. I went to Orion's page and it is very heart warming and so well done. I am noting the site for anyone I know that needs comforting. Vent any time that you feel the need. I know from personal experience that sometimes my pain is too great to be able to help someone else posting but that is what is so wonderful about this group. They know that venting helps the healing process. I do hope you find another doctor because you should not have to be suffering. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 : You know that you will find support on this list. I really think you should see another doctor, at the very least tell your MD about all the pain you have and not worry about how crazy she thinks you are. I realize it may be difficult to admit because you are young...and young people are suppose to be strong and healthy. You mentioned you worked in a lab...and you get a lot of resp. infections. I have one thought on this. I worked for 6 years in a moldy damp building and I got sick every spring when the AC went on....I swear there was something growing in the vents. May 2001 in my review I asked for my desk to be moved...they never moved me....until April when they downsized me! Anyway before I was laid off the AC went on a hot week in March I had a co-worker climb up on my desk and blow the air away from me...guess what four people (including the general manager) got bronchitis. They only two people I blew the air toward who didn't get sick were out of town on business....sigh...I am so glad to be out of that place. My DD just went to a B-day party for a 5 year old boy and yep..it was a Spiderman/bowling party... Hang in there and keep us updated. Amy (mom to , PDH) Re: question about emg hi amy; thanks for your response... as far as i know i don't have mito... a few years ago (when orion was still alive), some of his doctors as well as a geneticist mentioned that there was a possibility i could develop some mito problems. about a year or so ago i started having some relatively minor problems-- mainly unexplained pain in my back, legs and knees... also a lot of ear infections over the past couple years, which have damaged my hearing (for some reason i don't really feel the pain in my ears until the infection is so bad blood starts coming out-- sorry to be so gross). i haven't had an ear infection since about april (*knock on wood*), but the problems with pain have been getting increasingly worse... also been getting a lot headaches, abdominal pain, and having some trouble with keeping my blood sugar up... one day about a month ago i woke up and realized that my finger and part of my hand were numb, and my neck, shoulder, and upper arm were very sore-- the only way i can really describe it is to say it felt like i had run full-speed into a wall or something. took me almost a week to get in to see the doctor (her office hours are really crappy-- 9am to 12 noon-- i ! was working in a lab, and had to arrange with them to leave early one day)... she kind of acted like i was making it up or something, and gave me some muscle relaxers (which honestly, i only take when i absolutely have to, because they knock me out and i hate it) and rx strength motrin. the pain got worse, the numbness is still there, and now my wrist is hurting too... i went back to see her and finally she is sending me for the emg on my arm... sorry this is so long... i am always hesitant to write anything here, because orion isn't here anymore, and there really isn't anything helpful i can contribute to anything... i am just so frustrated with my doctor-- it's so hard to even get antibiotics from her when i get things like respiratory infections (which i usually get several times a year, and they last for weeks) or ear infections-- things that she can just look at or whatever and be able to see something is wrong. i don't know what to do about the pain that is always in my back and legs-- it feels like my legs are on fire or something... i don't know how to explain it. also, sometimes my feet go numb and i don't know why... i am afraid to bring this stuff up to my doctor because half the time she acts like i am crazy when i am sick, and i don't know how to explain to her about the pain that's there for no reason. i know i need to find a new doctor, but i've been hesitant to do that,! because she has been my doctor for years and knows my medical history, as well as orion's... hopefully the emg will give me some answers (she said it was to test for nerve damage), and maybe i can go from there...sorry this is so long-- i guess i just don't really have anyone to talk to about things like this, and maybe i just needed to vent... i feel so frustrated and scared...juliaorion's mommyp.s. thank you for your prayers... chris and i were just talking the other day, wondering what orion would have had on his birthday cake for his 4th birthday-- i was voting for spiderman I think they stick an electric current in your muscle. I'm not 100% sure. Let us know if it is painful and what the results are. Do you have any other symptoms of mito? I remember Orion. I'll say a prayer for him on what would have been his 4th B-day, next week.Amy (mom to , PDH)Orion's MommyOrion's Pagehttp://www.angelfire.com/ri/orion1 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 just wanted to thank everyone who responded... now i kind of know what to expect, and will also take someone's suggestion of taking tylenol before the test. the only appointment they had available was for september 18th, which is orion's birthday, so that's when i will be going. my mom said since it's on his birthday, "that's good because he'll be hanging around more and will help you get through the test". i was also thinking of maybe getting a little birthday cake for him-- i know it sounds weird, but it's something i never got to do... thanks again everyone Orion's Mommy Orion's Page http://www.angelfire.com/ri/orion1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 amy; thanks for bringing this up about the AC vents... i don't think it could be my job, but i'm thinking maybe in the heating/AC vents in my apartment... i work at an assisted living facility, and have only been there about a year and 1/2, and my resp. infections started a few years ago... i don't actually work in a lab yet-- i am in this biomed tech program at my school, and over the summer did two rotations at the fels institute at temple hospital in philly, as well as 7 orientation days at the wistar institute. once i graduate from community college, i'm hoping to get in jefferson university's cytogenetics program... i want to study genetic and metabolic disorders... thanks again, julia orion's mommy You mentioned you worked in a lab...and you get a lot of resp. infections. I have one thought on this. I worked for 6 years in a moldy damp building and I got sick every spring when the AC went on....I swear there was something growing in the vents. May 2001 in my review I asked for my desk to be moved...they never moved me....until April when they downsized me! Anyway before I was laid off the AC went on a hot week in March I had a co-worker climb up on my desk and blow the air away from me...guess what four people (including the general manager) got bronchitis. They only two people I blew the air toward who didn't get sick were out of town on business....sigh...I am so glad to be out of that place. Orion's Mommy Orion's Page http://www.angelfire.com/ri/orion1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 : That is spirtual in some sort of way having a test done on Orion's birthday. And no, I don't think it is weird having a little birthday cake in honor of Orion. You need to do that. We were seeing a family counselor for some other issues in our household and our counselor mentioned about Todd Beamers wife and how she is doing right now with public speaking regarding her husband. Anyway she told a story about it was her husband's birthday and she went to the circus with her kids and she was feeling a little blue and how her husband would have loved being at the circus with her and the kids in celebrating his birthday (who wouldn't circuses are fun). One the way home she told the kids that this was their dad's birthday and how he would have loved what they did and why she was feeling alittle sad. Her son looked at her and said "could we still have birthday cake"? And she was surprised by that. So no, it isn't weird about the cake. You need to honor his day that he would have been a year old and also to celebrate that you got through the test just fine. Let us know what little cake you decided on and how your test went. We are all rooting for you. N. mom to Leah Jaz739@... wrote: just wanted to thank everyone who responded... now i kind of know what to expect, and will also take someone's suggestion of taking tylenol before the test. the only appointment they had available was for september 18th, which is orion's birthday, so that's when i will be going. my mom said since it's on his birthday, "that's good because he'll be hanging around more and will help you get through the test". i was also thinking of maybe getting a little birthday cake for him-- i know it sounds weird, but it's something i never got to do... thanks again everyone Orion's Mommy Orion's Page http://www.angelfire.com/ri/orion1 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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