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 13, 2002 Report Share Posted September 13, 2002 parts of what you describe do sound like fibro, Im not sure though about the hair loss, rash, and sores. MAKE your doc run all the tests (blood work) etc, and besure to get him/her to check your tender spots- sorry having a brain fog and cant think of the right word. Good luck, and if your doc doesnt give you a answer keep looking! Webmd is a awesome sight you should check out. www.webmd.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 parts of what you describe do sound like fibro, Im not sure though about the hair loss, rash, and sores. MAKE your doc run all the tests (blood work) etc, and besure to get him/her to check your tender spots- sorry having a brain fog and cant think of the right word. Good luck, and if your doc doesnt give you a answer keep looking! Webmd is a awesome sight you should check out. www.webmd.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 parts of what you describe do sound like fibro, Im not sure though about the hair loss, rash, and sores. MAKE your doc run all the tests (blood work) etc, and besure to get him/her to check your tender spots- sorry having a brain fog and cant think of the right word. Good luck, and if your doc doesnt give you a answer keep looking! Webmd is a awesome sight you should check out. www.webmd.com 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 November 12, 2002 Report Share Posted November 12, 2002 Krystena, You sound like me..... not wanting the CF results, but just wanting to know! My son, is 12 weeks tomorrow. When I first started to notice something was " wrong " I thought he was simply allergic to my milk (or to me drinking milk). When he was about a week old, his BMs changed from frequent, to non-existent, and he seemed irritable. I thought he was constipated and called the lactation center to see if my milk was the problem. They told me no, but lack of calories would, to take him to his dr. and have him weighed. After weeks of back-and-forth they finally sent us to Pittsburgh for, what I thought, would be a simple biopsy. Josh was admitted for failure to thrive. He was 8-lbs. 14 ozs at birth and five weeks later he was only 8-lbs. 6 ozs and still jaundice. They ruled out Megacolon with the biopsy and then hit me with the CF thing.... just to rule it out.... I didn't even know what CF was then.... They did 2 sweat tests during his 10-day stay, but my little Itty Bitty just didn't produce enough sweat. They also did a cheek swab, along with a plethora of other testing. Some of the testing showed he indeed had fat in his stool, which confirmed the malabsorption. And his Alpha-1 AT test came back with elevated results. After several days of significant weight gain they sent us home, but we still had no idea what was going on - just to keep adding the fortifier to his milk. We waited for 2 weeks for the cheek swab results.... I called the doctor's office constantly after the first week passed... But we were getting nowhere. Finally at Josh's 8 week immunization visit, I asked the nurse..... She told me to call Pittsburgh myself! We now have a new dr. (whole other e-mail) Took me awhile but I finally got an answer... they never collected enough cheek cells and the test didn't work! All that waiting for naught.... very frustrating. We went BACK down to Pittsburgh for yet another sweat test (that didn't work-again) and to repeat the cheek swab. 10 days later the results of the Genzyme cheek swab came back negative. Not even ONE mutation. Seems very reassuring. Yet no one is addressing my son's issues. Now more than just malabsoption... add a nasty little cough that wont go away, reflux, and now stuffiness.... They said we should do a sweat test in the future, but left it at that.... in the meantime - I'm still a nervous wreck, and left feeling like I am blowing this whole thing way out of proportion. Or even making tings up... I'm actually glad when Josh coughs when other people are around so they don't think I'm nuts.... Is this normal???? I guess that's what I was getting to.... it's wonderful to have this list for support - even if our boys don't have CF... it's just nice knowing there is someone to vent to when it feels like no one else wants to listen. BTW - I have 3 other children - all girls. If it weren't for the fact that I've gone through the past 11-1/2 years with nary a problem (only 2 hospitalizations), I might just start to believe all this over-reacting mumbo-jumbo..... Good luck at your visit!!! n proud momma to 3 beautiful daughters and one young prince! Kaitlynn 11, Halie 7, Kennidy 5 & 12 wks " Life is not measured by the number of breaths you take ~ but by the moments that take your breath away. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Krystena, You sound like me..... not wanting the CF results, but just wanting to know! My son, is 12 weeks tomorrow. When I first started to notice something was " wrong " I thought he was simply allergic to my milk (or to me drinking milk). When he was about a week old, his BMs changed from frequent, to non-existent, and he seemed irritable. I thought he was constipated and called the lactation center to see if my milk was the problem. They told me no, but lack of calories would, to take him to his dr. and have him weighed. After weeks of back-and-forth they finally sent us to Pittsburgh for, what I thought, would be a simple biopsy. Josh was admitted for failure to thrive. He was 8-lbs. 14 ozs at birth and five weeks later he was only 8-lbs. 6 ozs and still jaundice. They ruled out Megacolon with the biopsy and then hit me with the CF thing.... just to rule it out.... I didn't even know what CF was then.... They did 2 sweat tests during his 10-day stay, but my little Itty Bitty just didn't produce enough sweat. They also did a cheek swab, along with a plethora of other testing. Some of the testing showed he indeed had fat in his stool, which confirmed the malabsorption. And his Alpha-1 AT test came back with elevated results. After several days of significant weight gain they sent us home, but we still had no idea what was going on - just to keep adding the fortifier to his milk. We waited for 2 weeks for the cheek swab results.... I called the doctor's office constantly after the first week passed... But we were getting nowhere. Finally at Josh's 8 week immunization visit, I asked the nurse..... She told me to call Pittsburgh myself! We now have a new dr. (whole other e-mail) Took me awhile but I finally got an answer... they never collected enough cheek cells and the test didn't work! All that waiting for naught.... very frustrating. We went BACK down to Pittsburgh for yet another sweat test (that didn't work-again) and to repeat the cheek swab. 10 days later the results of the Genzyme cheek swab came back negative. Not even ONE mutation. Seems very reassuring. Yet no one is addressing my son's issues. Now more than just malabsoption... add a nasty little cough that wont go away, reflux, and now stuffiness.... They said we should do a sweat test in the future, but left it at that.... in the meantime - I'm still a nervous wreck, and left feeling like I am blowing this whole thing way out of proportion. Or even making tings up... I'm actually glad when Josh coughs when other people are around so they don't think I'm nuts.... Is this normal???? I guess that's what I was getting to.... it's wonderful to have this list for support - even if our boys don't have CF... it's just nice knowing there is someone to vent to when it feels like no one else wants to listen. BTW - I have 3 other children - all girls. If it weren't for the fact that I've gone through the past 11-1/2 years with nary a problem (only 2 hospitalizations), I might just start to believe all this over-reacting mumbo-jumbo..... Good luck at your visit!!! n proud momma to 3 beautiful daughters and one young prince! Kaitlynn 11, Halie 7, Kennidy 5 & 12 wks " Life is not measured by the number of breaths you take ~ but by the moments that take your breath away. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Krystena, You sound like me..... not wanting the CF results, but just wanting to know! My son, is 12 weeks tomorrow. When I first started to notice something was " wrong " I thought he was simply allergic to my milk (or to me drinking milk). When he was about a week old, his BMs changed from frequent, to non-existent, and he seemed irritable. I thought he was constipated and called the lactation center to see if my milk was the problem. They told me no, but lack of calories would, to take him to his dr. and have him weighed. After weeks of back-and-forth they finally sent us to Pittsburgh for, what I thought, would be a simple biopsy. Josh was admitted for failure to thrive. He was 8-lbs. 14 ozs at birth and five weeks later he was only 8-lbs. 6 ozs and still jaundice. They ruled out Megacolon with the biopsy and then hit me with the CF thing.... just to rule it out.... I didn't even know what CF was then.... They did 2 sweat tests during his 10-day stay, but my little Itty Bitty just didn't produce enough sweat. They also did a cheek swab, along with a plethora of other testing. Some of the testing showed he indeed had fat in his stool, which confirmed the malabsorption. And his Alpha-1 AT test came back with elevated results. After several days of significant weight gain they sent us home, but we still had no idea what was going on - just to keep adding the fortifier to his milk. We waited for 2 weeks for the cheek swab results.... I called the doctor's office constantly after the first week passed... But we were getting nowhere. Finally at Josh's 8 week immunization visit, I asked the nurse..... She told me to call Pittsburgh myself! We now have a new dr. (whole other e-mail) Took me awhile but I finally got an answer... they never collected enough cheek cells and the test didn't work! All that waiting for naught.... very frustrating. We went BACK down to Pittsburgh for yet another sweat test (that didn't work-again) and to repeat the cheek swab. 10 days later the results of the Genzyme cheek swab came back negative. Not even ONE mutation. Seems very reassuring. Yet no one is addressing my son's issues. Now more than just malabsoption... add a nasty little cough that wont go away, reflux, and now stuffiness.... They said we should do a sweat test in the future, but left it at that.... in the meantime - I'm still a nervous wreck, and left feeling like I am blowing this whole thing way out of proportion. Or even making tings up... I'm actually glad when Josh coughs when other people are around so they don't think I'm nuts.... Is this normal???? I guess that's what I was getting to.... it's wonderful to have this list for support - even if our boys don't have CF... it's just nice knowing there is someone to vent to when it feels like no one else wants to listen. BTW - I have 3 other children - all girls. If it weren't for the fact that I've gone through the past 11-1/2 years with nary a problem (only 2 hospitalizations), I might just start to believe all this over-reacting mumbo-jumbo..... Good luck at your visit!!! n proud momma to 3 beautiful daughters and one young prince! Kaitlynn 11, Halie 7, Kennidy 5 & 12 wks " Life is not measured by the number of breaths you take ~ but by the moments that take your breath away. " 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. I was just asking if anyone had heard from you lately. Did you see that post? I'm anxious to know how you are. Did you beat the smoking? How about you husband? I personally am doing so so. Have had some progression and not feeling as well as before but still doing ok. In the summer I'm looking forward to going to Seattle WA and having a complete evaluation at UofWMC there. I'll feel better when that's been done. We're had some members transition into heaven...Steve , Sherry , Mathews and ..........oh goodness! I've forgotten someone. Help me somebody..... Tina hasn't been on board for quite a while. Reminds me I need to contact her. I think she is on the list... Let us hear from you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! hi! 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. I was just asking if anyone had heard from you lately. Did you see that post? I'm anxious to know how you are. Did you beat the smoking? How about you husband? I personally am doing so so. Have had some progression and not feeling as well as before but still doing ok. In the summer I'm looking forward to going to Seattle WA and having a complete evaluation at UofWMC there. I'll feel better when that's been done. We're had some members transition into heaven...Steve , Sherry , Mathews and ..........oh goodness! I've forgotten someone. Help me somebody..... Tina hasn't been on board for quite a while. Reminds me I need to contact her. I think she is on the list... Let us hear from you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! hi! 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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