Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Robin, there was a post here a couple weeks ago about a Doctor at Bostons childrens Hospital named Greg Licameli whose child has . You say your child had the scopes at Bostons Children, perhaps you could get into this doc somewhere in your pursuit(he's an ENT). The usual cure for is a tonsillectomy and this Doc has done a bunch on kids. Anyway I know your still in the early stages of diagnosis so keep reading and keep informed, there is a wealth of knowledge and kindness on this group. Everone here has been exactly where you are. Google the docs name and the article will come up. Glad your here, Steve. Dad to Randi 4.5 for ever and her pesky brothers Mikey and Mitch TERRIBLE TWO! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Robin, there was a post here a couple weeks ago about a Doctor at Bostons childrens Hospital named Greg Licameli whose child has . You say your child had the scopes at Bostons Children, perhaps you could get into this doc somewhere in your pursuit(he's an ENT). The usual cure for is a tonsillectomy and this Doc has done a bunch on kids. Anyway I know your still in the early stages of diagnosis so keep reading and keep informed, there is a wealth of knowledge and kindness on this group. Everone here has been exactly where you are. Google the docs name and the article will come up. Glad your here, Steve. Dad to Randi 4.5 for ever and her pesky brothers Mikey and Mitch TERRIBLE TWO! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Thank you so much Steve!!! I am going to mention his name to my doctor and see if we can get a referral to him. They aren't even sure if that is what is wrong with him. BUT...it is crazy. After posting my post here Uriah was starting another " spell " and this time he actually developed mouth sores! We never noticed them before. But then again I guess we are still just tying everything together to be one sickness rather than this that or the other thing!! Till HE Returns, Robin http://www.homeschoolblogger.com/luvnmyJesus/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Thank you so much Steve!!! I am going to mention his name to my doctor and see if we can get a referral to him. They aren't even sure if that is what is wrong with him. BUT...it is crazy. After posting my post here Uriah was starting another " spell " and this time he actually developed mouth sores! We never noticed them before. But then again I guess we are still just tying everything together to be one sickness rather than this that or the other thing!! Till HE Returns, Robin http://www.homeschoolblogger.com/luvnmyJesus/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hey there! Welcome. I love it here so I'm glad your sister told you about it. Great people here! You have been through so much , but you sound great, positive. I, too had to leave a career that I loved and am now on disability. It was my passion. So I can totally relate. I was a Special Education teacher. I keep hoping maybe one day... We'll see? I've taken Ultram, but it didn't work for me. I wish it would have. I have a friend on Lyrica who is having great success with it. Anyway, I'm Christy from NC and it's nice to meet you! Sincerely, Christy or 2zeesmommy :-) Have a great Saturday! new here.. hi..my sister told me about this site..she likes it,so i am giving it a try..have not read many posts yet but working on it..i am glad to get to talk to others that also are in my shoes..i am 56, i have intersistitis..or i.c for short.not sure how to spell these things..just know what they are..ha..had my bladder removed in 2000 but still have the pain 24/7 non stop..i had been on a roller coaster from hell with the pain meds plus way too many other drugs..but now it is lined out thanks to a very good friend and my family dr. i had to give up because my insurance changed..but she stepped in when i was days from dying and litterly saved my life..plus she paid for it since my ins. would not..now i am on only 5 meds..1 pain med..ultram..but i am trying a new drug..lyrica..i had a free trial for a week..it is an amazing drug..in one day..my pain was down to a 3 and i felt alive for once..but again..my insurance refuses to pay..it is 180.00 a mon..i am doing a study now on how it is going to help with nerve pain..so maybe they can help with the cost..any way..i had to give up my job of nursing because i was in cronic pain and could not think straight..so now am on disability..i really miss being a nurse..but i have alot of pets to keep my busy..several big parrots..dogs cats..vollunteer at hospice for 3 patients now..i love doing this..i also have avn..a bone disease..which means by bones are actually dying.had a hip replaced..and i can not believe how great it help..it is perfect..as if it was my real hip..it is great to know the pain i go thru evey day..there are so many others as well.i am looking forward to getting to know everyone..sorry so long..side effect of a new med..i talk alot..ha... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hey there! Welcome. I love it here so I'm glad your sister told you about it. Great people here! You have been through so much , but you sound great, positive. I, too had to leave a career that I loved and am now on disability. It was my passion. So I can totally relate. I was a Special Education teacher. I keep hoping maybe one day... We'll see? I've taken Ultram, but it didn't work for me. I wish it would have. I have a friend on Lyrica who is having great success with it. Anyway, I'm Christy from NC and it's nice to meet you! Sincerely, Christy or 2zeesmommy :-) Have a great Saturday! new here.. hi..my sister told me about this site..she likes it,so i am giving it a try..have not read many posts yet but working on it..i am glad to get to talk to others that also are in my shoes..i am 56, i have intersistitis..or i.c for short.not sure how to spell these things..just know what they are..ha..had my bladder removed in 2000 but still have the pain 24/7 non stop..i had been on a roller coaster from hell with the pain meds plus way too many other drugs..but now it is lined out thanks to a very good friend and my family dr. i had to give up because my insurance changed..but she stepped in when i was days from dying and litterly saved my life..plus she paid for it since my ins. would not..now i am on only 5 meds..1 pain med..ultram..but i am trying a new drug..lyrica..i had a free trial for a week..it is an amazing drug..in one day..my pain was down to a 3 and i felt alive for once..but again..my insurance refuses to pay..it is 180.00 a mon..i am doing a study now on how it is going to help with nerve pain..so maybe they can help with the cost..any way..i had to give up my job of nursing because i was in cronic pain and could not think straight..so now am on disability..i really miss being a nurse..but i have alot of pets to keep my busy..several big parrots..dogs cats..vollunteer at hospice for 3 patients now..i love doing this..i also have avn..a bone disease..which means by bones are actually dying.had a hip replaced..and i can not believe how great it help..it is perfect..as if it was my real hip..it is great to know the pain i go thru evey day..there are so many others as well.i am looking forward to getting to know everyone..sorry so long..side effect of a new med..i talk alot..ha... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Hey there! Welcome. I love it here so I'm glad your sister told you about it. Great people here! You have been through so much , but you sound great, positive. I, too had to leave a career that I loved and am now on disability. It was my passion. So I can totally relate. I was a Special Education teacher. I keep hoping maybe one day... We'll see? I've taken Ultram, but it didn't work for me. I wish it would have. I have a friend on Lyrica who is having great success with it. Anyway, I'm Christy from NC and it's nice to meet you! Sincerely, Christy or 2zeesmommy :-) Have a great Saturday! new here.. hi..my sister told me about this site..she likes it,so i am giving it a try..have not read many posts yet but working on it..i am glad to get to talk to others that also are in my shoes..i am 56, i have intersistitis..or i.c for short.not sure how to spell these things..just know what they are..ha..had my bladder removed in 2000 but still have the pain 24/7 non stop..i had been on a roller coaster from hell with the pain meds plus way too many other drugs..but now it is lined out thanks to a very good friend and my family dr. i had to give up because my insurance changed..but she stepped in when i was days from dying and litterly saved my life..plus she paid for it since my ins. would not..now i am on only 5 meds..1 pain med..ultram..but i am trying a new drug..lyrica..i had a free trial for a week..it is an amazing drug..in one day..my pain was down to a 3 and i felt alive for once..but again..my insurance refuses to pay..it is 180.00 a mon..i am doing a study now on how it is going to help with nerve pain..so maybe they can help with the cost..any way..i had to give up my job of nursing because i was in cronic pain and could not think straight..so now am on disability..i really miss being a nurse..but i have alot of pets to keep my busy..several big parrots..dogs cats..vollunteer at hospice for 3 patients now..i love doing this..i also have avn..a bone disease..which means by bones are actually dying.had a hip replaced..and i can not believe how great it help..it is perfect..as if it was my real hip..it is great to know the pain i go thru evey day..there are so many others as well.i am looking forward to getting to know everyone..sorry so long..side effect of a new med..i talk alot..ha... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Hello lm new here and l am just getting to grips with posting! its a bit different to what lm used to... l have been reading .all the posts.l have Hashimoto's and havent had any thyroid meds for 13months now...as l react to all thyroid meds ,pain killers, antibiotics, penicillian and lots of food and the sun! l was diagnosed with lupus ,sjogrens ,fibromyalgia and hughes syndrome in march.to add to the all ready present autoimune diseases..l have seen my TSH steadily rise from 3.76 ( last october) when my new endo said l was euthyroid,to 6.02 in july..to 33.10 in september and now 22.08...so now lm Hypothyroid (as if l didnt know) My blood preasure is on average 72/55 and my temp 34.5 to 35.7...the figures just caught me up!! just a shame my body has felt BADLY Hypo for the past year..the hospital have said l can have T3 and evotrox ..but l am going to start T3 only , as l react very badly to levo..as l did armour thyroid.which is why l ended up being refered to the nhs hospital ,as all in the private world of Drs l had seen didnt know what was happening.SO...l was hoping To make contact with ce who in March offered adviseon the Thyroiduk help forum ,but l couldnt start the t3 untill l had sorted out if l had lupus or not... my blood results show this week that l am low in Vitamin D ..but B12 and iron are ok....SO any idea's how l should proceed would be gratefully recieved ..l believe paul suggests splitting the dose..l would have to start with a very low dose incase l react..l know he sugests erly morning ..but how early! and is it ok to take T3 only with the Lupus now present..and l have Vit D drops..should l take them first?sorry for the ramble .... Quote Link to comment Share on other sites More sharing options...
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