Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi Terri, The itching might be a side effect from one of the meds that you are taking. What are you on? Just a thought. Debbiemosaicgirl1 wrote: Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi Terri, The itching might be a side effect from one of the meds that you are taking. What are you on? Just a thought. Debbiemosaicgirl1 wrote: Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi Terri, The itching might be a side effect from one of the meds that you are taking. What are you on? Just a thought. Debbiemosaicgirl1 wrote: Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri, the only itching I have is where I have neuropathy--the forward half of my feet (just the bottoms) & one of my fingers. I can usually ignore itching from mosquito bites, etc., but this drives my crazy! It's like the feeling you get when your face has been numbed for dental work & the numbness is about half gone. It itches, but scratching doesn't bring any relief. I'm sure it's part of the sarc, because the first symptom I had of systemic involvement was intense itching of my eyes that lasted several days. I would run my fingernails over my eyelids & was tempted to use my hairbrush. Nothing helped, & meanwhile I got the fatigue, muscle weakness, etc. The eye itching gradually subsided & never came back. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: 's legsDate: Wed, 25 Jan 2006 12:23:25 -0000Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri, the only itching I have is where I have neuropathy--the forward half of my feet (just the bottoms) & one of my fingers. I can usually ignore itching from mosquito bites, etc., but this drives my crazy! It's like the feeling you get when your face has been numbed for dental work & the numbness is about half gone. It itches, but scratching doesn't bring any relief. I'm sure it's part of the sarc, because the first symptom I had of systemic involvement was intense itching of my eyes that lasted several days. I would run my fingernails over my eyelids & was tempted to use my hairbrush. Nothing helped, & meanwhile I got the fatigue, muscle weakness, etc. The eye itching gradually subsided & never came back. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: 's legsDate: Wed, 25 Jan 2006 12:23:25 -0000Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri, yes, sometimes it is so bad I take medication for it, I just start itching, it can start anywhere, and no lesions, just itch. Yes, it is worse in the summer with the heat, and even worse if I've been outside, any sun on my skin makes me crazy, I'll itch, and even break out with sores. But I also get the over itching when I am really worn out, tired, you know. Marla Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all. Terri Don't know if this is true or not but on another forum someone said their doctor told them to wash with selson blue shampoo. They said it was helping with the itching a lot. I can't remember if you said yours was itching , but just thought I would throw my 2 cents in. Elodia ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri, yes, sometimes it is so bad I take medication for it, I just start itching, it can start anywhere, and no lesions, just itch. Yes, it is worse in the summer with the heat, and even worse if I've been outside, any sun on my skin makes me crazy, I'll itch, and even break out with sores. But I also get the over itching when I am really worn out, tired, you know. Marla Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all. Terri Don't know if this is true or not but on another forum someone said their doctor told them to wash with selson blue shampoo. They said it was helping with the itching a lot. I can't remember if you said yours was itching , but just thought I would throw my 2 cents in. Elodia ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 I'll pray for you Terri. I have something going on with my feet. Not exactly numb but odd almost numbness in my toes but.....hmmmm...hard to move them. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 I'll pray for you Terri. I have something going on with my feet. Not exactly numb but odd almost numbness in my toes but.....hmmmm...hard to move them. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 I'll pray for you Terri. I have something going on with my feet. Not exactly numb but odd almost numbness in my toes but.....hmmmm...hard to move them. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 I had of systemic involvement was intense itching of my eyes that lasted several days. I would run my fingernails over my eyelids Rose, I had this last year, I thought it was just allergies, it drove me crazy, I still get it a little, and get no relief, until I close my eyes for the night and go to sleep. Wow, I really thought this was allergies?? duh, me :-) Marla Terri, the only itching I have is where I have neuropathy--the forward half of my feet (just the bottoms) & one of my fingers. I can usually ignore itching from mosquito bites, etc., but this drives my crazy! It's like the feeling you get when your face has been numbed for dental work & the numbness is about half gone. It itches, but scratching doesn't bring any relief. I'm sure it's part of the sarc, because the first symptom I had of systemic involvement was intense itching of my eyes that lasted several days. I would run my fingernails over my eyelids & was tempted to use my hairbrush. Nothing helped, & meanwhile I got the fatigue, muscle weakness, etc. The eye itching gradually subsided & never came back. Ramblin' Rose Moderator From: "mosaicgirl1" Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: 's legs Date: Wed, 25 Jan 2006 12:23:25 -0000 Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all. Terri > > Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in. > Elodia > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 I had of systemic involvement was intense itching of my eyes that lasted several days. I would run my fingernails over my eyelids Rose, I had this last year, I thought it was just allergies, it drove me crazy, I still get it a little, and get no relief, until I close my eyes for the night and go to sleep. Wow, I really thought this was allergies?? duh, me :-) Marla Terri, the only itching I have is where I have neuropathy--the forward half of my feet (just the bottoms) & one of my fingers. I can usually ignore itching from mosquito bites, etc., but this drives my crazy! It's like the feeling you get when your face has been numbed for dental work & the numbness is about half gone. It itches, but scratching doesn't bring any relief. I'm sure it's part of the sarc, because the first symptom I had of systemic involvement was intense itching of my eyes that lasted several days. I would run my fingernails over my eyelids & was tempted to use my hairbrush. Nothing helped, & meanwhile I got the fatigue, muscle weakness, etc. The eye itching gradually subsided & never came back. Ramblin' Rose Moderator From: "mosaicgirl1" Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: 's legs Date: Wed, 25 Jan 2006 12:23:25 -0000 Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all. Terri > > Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in. > Elodia > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri consider yourself in my prayers. Marla Rose, Thanks for the info. I am having some numbness now in my feet and did have some itching prior to the numbness but this is different. It is usuall chest, arms, face etc. I am going to Duke February 8th so you guys pray for me please. I need a treatment protocol. Thanks for the info. Terri ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri consider yourself in my prayers. Marla Rose, Thanks for the info. I am having some numbness now in my feet and did have some itching prior to the numbness but this is different. It is usuall chest, arms, face etc. I am going to Duke February 8th so you guys pray for me please. I need a treatment protocol. Thanks for the info. Terri ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Terri consider yourself in my prayers. Marla Rose, Thanks for the info. I am having some numbness now in my feet and did have some itching prior to the numbness but this is different. It is usuall chest, arms, face etc. I am going to Duke February 8th so you guys pray for me please. I need a treatment protocol. Thanks for the info. Terri ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Yeah, I get itching which is worse in winter but I get the 'crawlies', too. It feels like something is crawling on my leg or whereever and there's nothing there. It's usually in the same area on my leg, too. It can happen over and over again in one day. But the 'itchies' I get everywhere...even on my scalp. It feels like you could scratch right to the bone. I'm a little more worried about the 'crawlies' cuz even people who don't have sarc have the 'itchies'. Now what about the 'burpies'? ...yesterday I must have burped hundreds of times...even my mom said that my burping isn't normal. And it's getting worse. I can go for hours and it often turns into hiccuping which also last for a long time and can be very painful. I have the hiccups every day often after taking a mouthful or two of food. I wonder if it has something to do with the vocal cord dysfunction I have which is also caused by sarc. My digestion system is wack. My sinuses have also been 'on the rampage' lately. My sleeping schedule is doing something weird again, too....grrrrr. i need a vacation from all this. :c S.Debbie wrote: Hi Terri, The itching might be a side effect from one of the meds that you are taking. What are you on? Just a thought. Debbiemosaicgirl1 wrote: Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Yeah, I get itching which is worse in winter but I get the 'crawlies', too. It feels like something is crawling on my leg or whereever and there's nothing there. It's usually in the same area on my leg, too. It can happen over and over again in one day. But the 'itchies' I get everywhere...even on my scalp. It feels like you could scratch right to the bone. I'm a little more worried about the 'crawlies' cuz even people who don't have sarc have the 'itchies'. Now what about the 'burpies'? ...yesterday I must have burped hundreds of times...even my mom said that my burping isn't normal. And it's getting worse. I can go for hours and it often turns into hiccuping which also last for a long time and can be very painful. I have the hiccups every day often after taking a mouthful or two of food. I wonder if it has something to do with the vocal cord dysfunction I have which is also caused by sarc. My digestion system is wack. My sinuses have also been 'on the rampage' lately. My sleeping schedule is doing something weird again, too....grrrrr. i need a vacation from all this. :c S.Debbie wrote: Hi Terri, The itching might be a side effect from one of the meds that you are taking. What are you on? Just a thought. Debbiemosaicgirl1 wrote: Quick question: Does anyone have phantom itching - but no sores? It is especially bad in the summer, but sometimes I itch with no cause at all.Terri>> Don't know if this is true or not but on another forum someone said > their doctor told them to wash with selson blue shampoo. They said it > was helping with the itching a lot. I can't remember if you said yours > was itching , but just thought I would throw my 2 cents in.> Elodia>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Selsun Blue is good for tinea versicolor, a fungal infection of the skin that shows up as white patches, mostly on the face, neck & shoulders. Tanning makes it more obvious. I used to have this & ridded myself of it with the Selsun Blue. Maybe there is some relationship. Maybe not . . . . . Ramblin' Rose Hi Rosie! Tinea versacolor?!!? I haven't heard those words since my sarc was first misdiagnosed as this. I went to a local on-vacation dr. who was sure that is what I had. My real dr. said, "WHAT?!?! this looks nothing like Tinea!" Oh well, that's it ... that's all I had to say ... lol Hugs and Prayers, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 S What kind of trouble are you having with your sinuses? My nose is always dry but feels full. I think I could use some tnt to blast the thing clear. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 S What kind of trouble are you having with your sinuses? My nose is always dry but feels full. I think I could use some tnt to blast the thing clear. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 S What kind of trouble are you having with your sinuses? My nose is always dry but feels full. I think I could use some tnt to blast the thing clear. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 LOL I have chemo brain tonight & keep hitting the wrong buttons & rereading the same email 3 times! BUT the good news is my mri results say the Cytoxan is starting to work! There are less of the granulomas thingees on my brain!!!!!!! Just when you wonder why you go through the treatments some good news comes. My chest xray & kidney function are good & so is my pulmonary lung function! I couldn't be happier if I won the lotto!!!!! Thanks for all the prayers. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 LOL I have chemo brain tonight & keep hitting the wrong buttons & rereading the same email 3 times! BUT the good news is my mri results say the Cytoxan is starting to work! There are less of the granulomas thingees on my brain!!!!!!! Just when you wonder why you go through the treatments some good news comes. My chest xray & kidney function are good & so is my pulmonary lung function! I couldn't be happier if I won the lotto!!!!! Thanks for all the prayers. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 LOL I have chemo brain tonight & keep hitting the wrong buttons & rereading the same email 3 times! BUT the good news is my mri results say the Cytoxan is starting to work! There are less of the granulomas thingees on my brain!!!!!!! Just when you wonder why you go through the treatments some good news comes. My chest xray & kidney function are good & so is my pulmonary lung function! I couldn't be happier if I won the lotto!!!!! Thanks for all the prayers. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 You're in my prayers too Terri. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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