Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 - I believe the rash across your nose and on your cheeks and also the fingers being numb can be related to Lupus. I hope you get a good doctor and make sure he does blood work. -- In @y..., " " wrote: > Hi! I'm new and am not 100% sure I even belong here. I just want someone to talk to who won't think I'm mental. Currently, I am not diagnosed with anything, but I have a doctors appointment next Friday. I'm not even sure how I will handle the appointment because I think my doctor will think I'm whining about stuff that normal people have to endure every day. Not to bore you with details or anything, but please, tell me if these " symptoms " are what normal people live with..... > > > Age range: > 34 > > Male/female: > Female > > What are the symptoms? > -sometimes (every 2 or so years) my hair will start to fall out-not in patches, but more of a all over thinning > -migraines (enough to make me light sensitive and nauseated) > -very fine pink rash under my lips and on my chin > -redness across the bridge of my nose and on my cheeks-it's not really a rash, more of a blush > -while I'm sleeping, I get these intense pains in my neck and shoulder (like when you turn your head too fast) > -sores in my nose > -canker sores in my mouth and some " different " ones on the roof of my mouth towards the back > -sleep disturbances ranging from not falling asleep after 6 hours of laying in bed to not being able to stay awake after 10 hours of sleep and then needing a nap 3 hours later > -mental fog > -something like dyslexia...can't remember how to spell > -body feels like I've always got the flu-tired and achy > -joint pains > -shooting pains in my elbows, upper arms, and thighs > -leg cramps at night-the pain from which lasts 3-4 days > -several toes and fingertips are numb > -sometimes I get patches of skin on my legs that are very tender- like the skin is raw, but there are no marks at all > -when I lay down at night, my whole body throbs like I've been on the go all day > > Has you illness been diagnosed? > No, but I have an appointment next Friday > > How long did you suffer before you got help? > It's been a little over a year since the majority of the symptoms started > > Is there a time that you can remember when it started? > Yes, I believe most of my " problems " started last June when I was in a car accident > > Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? > A bit > > Are you on disability? > No, but I haven't the motivation or energy to look for a job, either > > > > Chris > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 - I believe the rash across your nose and on your cheeks and also the fingers being numb can be related to Lupus. I hope you get a good doctor and make sure he does blood work. -- In @y..., " " wrote: > Hi! I'm new and am not 100% sure I even belong here. I just want someone to talk to who won't think I'm mental. Currently, I am not diagnosed with anything, but I have a doctors appointment next Friday. I'm not even sure how I will handle the appointment because I think my doctor will think I'm whining about stuff that normal people have to endure every day. Not to bore you with details or anything, but please, tell me if these " symptoms " are what normal people live with..... > > > Age range: > 34 > > Male/female: > Female > > What are the symptoms? > -sometimes (every 2 or so years) my hair will start to fall out-not in patches, but more of a all over thinning > -migraines (enough to make me light sensitive and nauseated) > -very fine pink rash under my lips and on my chin > -redness across the bridge of my nose and on my cheeks-it's not really a rash, more of a blush > -while I'm sleeping, I get these intense pains in my neck and shoulder (like when you turn your head too fast) > -sores in my nose > -canker sores in my mouth and some " different " ones on the roof of my mouth towards the back > -sleep disturbances ranging from not falling asleep after 6 hours of laying in bed to not being able to stay awake after 10 hours of sleep and then needing a nap 3 hours later > -mental fog > -something like dyslexia...can't remember how to spell > -body feels like I've always got the flu-tired and achy > -joint pains > -shooting pains in my elbows, upper arms, and thighs > -leg cramps at night-the pain from which lasts 3-4 days > -several toes and fingertips are numb > -sometimes I get patches of skin on my legs that are very tender- like the skin is raw, but there are no marks at all > -when I lay down at night, my whole body throbs like I've been on the go all day > > Has you illness been diagnosed? > No, but I have an appointment next Friday > > How long did you suffer before you got help? > It's been a little over a year since the majority of the symptoms started > > Is there a time that you can remember when it started? > Yes, I believe most of my " problems " started last June when I was in a car accident > > Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? > A bit > > Are you on disability? > No, but I haven't the motivation or energy to look for a job, either > > > > Chris > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Well, that's not good....if nothing else, I hope he gives me a referral to a rhumatologist. I guess I will have to wait and see-sigh Chris Re: Hi! - I believe the rash across your nose and on your cheeks and also the fingers being numb can be related to Lupus. I hope you get a good doctor and make sure he does blood work. -- In @y..., " " wrote: > Hi! I'm new and am not 100% sure I even belong here. I just want someone to talk to who won't think I'm mental. Currently, I am not diagnosed with anything, but I have a doctors appointment next Friday. I'm not even sure how I will handle the appointment because I think my doctor will think I'm whining about stuff that normal people have to endure every day. Not to bore you with details or anything, but please, tell me if these " symptoms " are what normal people live with..... > > > Age range: > 34 > > Male/female: > Female > > What are the symptoms? > -sometimes (every 2 or so years) my hair will start to fall out-not in patches, but more of a all over thinning > -migraines (enough to make me light sensitive and nauseated) > -very fine pink rash under my lips and on my chin > -redness across the bridge of my nose and on my cheeks-it's not really a rash, more of a blush > -while I'm sleeping, I get these intense pains in my neck and shoulder (like when you turn your head too fast) > -sores in my nose > -canker sores in my mouth and some " different " ones on the roof of my mouth towards the back > -sleep disturbances ranging from not falling asleep after 6 hours of laying in bed to not being able to stay awake after 10 hours of sleep and then needing a nap 3 hours later > -mental fog > -something like dyslexia...can't remember how to spell > -body feels like I've always got the flu-tired and achy > -joint pains > -shooting pains in my elbows, upper arms, and thighs > -leg cramps at night-the pain from which lasts 3-4 days > -several toes and fingertips are numb > -sometimes I get patches of skin on my legs that are very tender- like the skin is raw, but there are no marks at all > -when I lay down at night, my whole body throbs like I've been on the go all day > > Has you illness been diagnosed? > No, but I have an appointment next Friday > > How long did you suffer before you got help? > It's been a little over a year since the majority of the symptoms started > > Is there a time that you can remember when it started? > Yes, I believe most of my " problems " started last June when I was in a car accident > > Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? > A bit > > Are you on disability? > No, but I haven't the motivation or energy to look for a job, either > > > > Chris > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Well, that's not good....if nothing else, I hope he gives me a referral to a rhumatologist. I guess I will have to wait and see-sigh Chris Re: Hi! - I believe the rash across your nose and on your cheeks and also the fingers being numb can be related to Lupus. I hope you get a good doctor and make sure he does blood work. -- In @y..., " " wrote: > Hi! I'm new and am not 100% sure I even belong here. I just want someone to talk to who won't think I'm mental. Currently, I am not diagnosed with anything, but I have a doctors appointment next Friday. I'm not even sure how I will handle the appointment because I think my doctor will think I'm whining about stuff that normal people have to endure every day. Not to bore you with details or anything, but please, tell me if these " symptoms " are what normal people live with..... > > > Age range: > 34 > > Male/female: > Female > > What are the symptoms? > -sometimes (every 2 or so years) my hair will start to fall out-not in patches, but more of a all over thinning > -migraines (enough to make me light sensitive and nauseated) > -very fine pink rash under my lips and on my chin > -redness across the bridge of my nose and on my cheeks-it's not really a rash, more of a blush > -while I'm sleeping, I get these intense pains in my neck and shoulder (like when you turn your head too fast) > -sores in my nose > -canker sores in my mouth and some " different " ones on the roof of my mouth towards the back > -sleep disturbances ranging from not falling asleep after 6 hours of laying in bed to not being able to stay awake after 10 hours of sleep and then needing a nap 3 hours later > -mental fog > -something like dyslexia...can't remember how to spell > -body feels like I've always got the flu-tired and achy > -joint pains > -shooting pains in my elbows, upper arms, and thighs > -leg cramps at night-the pain from which lasts 3-4 days > -several toes and fingertips are numb > -sometimes I get patches of skin on my legs that are very tender- like the skin is raw, but there are no marks at all > -when I lay down at night, my whole body throbs like I've been on the go all day > > Has you illness been diagnosed? > No, but I have an appointment next Friday > > How long did you suffer before you got help? > It's been a little over a year since the majority of the symptoms started > > Is there a time that you can remember when it started? > Yes, I believe most of my " problems " started last June when I was in a car accident > > Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? > A bit > > Are you on disability? > No, but I haven't the motivation or energy to look for a job, either > > > > Chris > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 wrote: > > Hi! I'm new and am not 100% sure I even belong here. I just want someone to talk to > who won't think I'm mental. Do you have the tender points? You might have lupus or fibromyalgia or both. You might want to talk to some of the people in the lupus-living group which is for people with lupus, fibro or some have both. They're going to need to run some tests and bloodwork on you first before anyone can really help to give you advice, but I will say this, you are *not* mental! There is something physically wrong with your body, and now it's just a matter of finding out what it is. If the first doctor looks at you and says " I can't find a thing, I think it's all in your head " , just keep moving along and find another doctor. In the meantime, feel free to hang out here and ask questions or not, you can just be silent and listen if you want to. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 I too , am very happy to hear that there are some docs who are willing to do " the right thing for their patients sake-------not their egos. GREAT!!! Your wee one is lucky to have such a determined & caring mommy. have a great week now............It will start to get better soon LOVE & HUGS, grandmomBEV Re: Hi! Thanks guys. I just got the call I was waiting on! Caden goes in Nov. 25th for his clinic appt. The dr will decide whether or not he will get a bronchoscopy and nasal pot. diff. test. He (CF director/ M.D), said that the Dr we would be seeing deals with " hard to diagnose " CF patients and is going to make us his last appt of the day so he can have as long as he would like to spend with us! Sounds good to me! Then we still have to go back to Cleveland Dec 13th anyway for his metabolic check up, so if he gets the nasal pot. and bronch. testing, he may be able to get it that same week we are due back there! I am so thrilled I have a Dr. willing to help us. Poor little Caden just needs some relief, one way or another. I hate seeing him so full of " snot " . He will get so frustrated and stomp his feet and say, " Mommy, I can't breathe! " Breaks my heart cause there is nothing I can do. Now, I have to watch him go through these darned old steriods again. Thanks for all of your support! Krystena Hi! Krystena--you are doing all the right things--pulling for all of you from here in Berkeley, where, as usual, I am, Confused in California! (Thank heavens, the only totally Democratic state in all the union!), Love to all of you, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Thanks guys. I just got the call I was waiting on! Caden goes in Nov. 25th for his clinic appt. The dr will decide whether or not he will get a bronchoscopy and nasal pot. diff. test. He (CF director/ M.D), said that the Dr we would be seeing deals with " hard to diagnose " CF patients and is going to make us his last appt of the day so he can have as long as he would like to spend with us! Sounds good to me! Then we still have to go back to Cleveland Dec 13th anyway for his metabolic check up, so if he gets the nasal pot. and bronch. testing, he may be able to get it that same week we are due back there! I am so thrilled I have a Dr. willing to help us. Poor little Caden just needs some relief, one way or another. I hate seeing him so full of " snot " . He will get so frustrated and stomp his feet and say, " Mommy, I can't breathe! " Breaks my heart cause there is nothing I can do. Now, I have to watch him go through these darned old steriods again. Thanks for all of your support! Krystena Hi! Krystena--you are doing all the right things--pulling for all of you from here in Berkeley, where, as usual, I am, Confused in California! (Thank heavens, the only totally Democratic state in all the union!), Love to all of you, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 hi everyone! it's been awhile since i was here last....so how is everyone doing? good i hope....has anyone heard from tina? last i heard she was being put on transplant list.....i was wondering how she was doing. thanks, tammycub Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Tammy How are you doing? I hope things are better for you than they were. As to Tina, she doesn't post often. (Last post here was December). She is listed for Transplant in Pittsburgh and keeping her phone at her side waiting for a call. She is on facebook too and posted very recently there. > > hi everyone! > it's been awhile since i was here last....so how is everyone doing? good i hope....has anyone heard from tina? last i heard she was being put on transplant list.....i was wondering how she was doing. > > thanks, > tammycub > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Tammy How are you doing? I hope things are better for you than they were. As to Tina, she doesn't post often. (Last post here was December). She is listed for Transplant in Pittsburgh and keeping her phone at her side waiting for a call. She is on facebook too and posted very recently there. > > hi everyone! > it's been awhile since i was here last....so how is everyone doing? good i hope....has anyone heard from tina? last i heard she was being put on transplant list.....i was wondering how she was doing. > > thanks, > tammycub > Quote Link to comment Share on other sites More sharing options...
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