Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Ron, I don't know if this is the precursor to the wheelchair or scooter phase of this disease. I for one, choose the denial route right now. I keep thinking that if I can hold out without needing the cane, or getting on the scooter at the store, that I can keep myself strong enough to fight that off. I know many on the list have graduated to canes and gocarts. I also know that some days, I am so weak that I really want to use the gocart in the store. You know that I keep you in my heart and prayers. Love to you dear friend, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Hi: Yes, unfortunately I suffer from the same leg issues. I was so alarmed in the beginning I had my dr write a script for me to have a bone scan b/c I was convinced I had bone cancer b/c the pain is so intense. I dont have bone cancer thank god, but what my rheum. said is that I have the sarcoid granulomas in the soft tissues of my legs, which is causing the pain. I do take pain medication, but something that really helps is a warm bath with aveeno in it. The coloidal oatmeal is a natural relaxant and it does wonders for the pain. Do you have the pain in both your thighs?..thats where my pain is, in the upper legs......I cant stay on my feet for long, or even walk the mall for very long without having to get to the car to lay down. I hope you feel better. Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Ron, I don't have an answer for you.....all I can tell you is that I have had trouble with my legs all my life.......with several of the symptoms you describe....I also believe I was born with Sarc or got it soon after... Hope you don't have to go the chair route, but hey, there is worse. Sending lots of hugs to you. Darlene > Lately, I have been experiencing numbness, coldness, stiffness, > contractions, weakness and soreness in my legs. I can not stand for > long periods of time and can not walk very far without getting tired > and breaking out in a heavy sweat. > > Last week I used a scooter in the grocery store for the first time. > It was such a big help but I have always refused the idea/notion of > using them. > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > MOBIILITY. > > Is anyone out their in " Sacr-World " that have experience these same > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > If so, any suggestions on how long it will be before I have to make > that transistion? > > Your experience and feedback is greatly appreciated. > > Ron > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Hey Ron, Sorry your having trouble with your legs, its a scarry thought, but one which I understand totally. I have had trouble with this horrible pain in my lower back and hips down both legs since the onsought of my disease... I can only walk a few feet now without the help of a quad cane.. and no more than about 30 ft with it...so for my long walks from parking lots to doctors offices I have to either have someone that will help hold on to me or.. take a scooter...which I can't get out of my vehicle unless someone is with me...to get it out for me... I don't like having to count on help as I am still young yet.. at 46 but I do enjoy the liberty and freedom and the ability I get from not struggling as much while trying to ambulate more than I know I can..comfortably... Its your decision.. I was self concious at first.. but now.. Its just a way of life... Good to see you posting, -- MY LEGS!!! Lately, I have been experiencing numbness, coldness, stiffness, contractions, weakness and soreness in my legs. I can not stand for long periods of time and can not walk very far without getting tired and breaking out in a heavy sweat. Last week I used a scooter in the grocery store for the first time. It was such a big help but I have always refused the idea/notion of using them. However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY MOBIILITY. Is anyone out their in "Sacr-World" that have experience these same symptoms? Is this possibly a precursor to a wheel chair or a scooter? If so, any suggestions on how long it will be before I have to make that transistion? Your experience and feedback is greatly appreciated. Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Sharon, That's not what I'm saying. I don't in any way, shape or form think that someone in a wheelchair, powerchair, or in my words--gocart choose to be there. I am not that niave. I know very well, that it is just a matter of time before i too HAVE to use one of these tools. My denial is that I don't want to accept that thought as my reality. Not yet anyhow. I also understand your anger. You need your chair, and it has afforded you a freedom of mobility that you wouldn't have without it. I am so thankful that I'm not there yet. I also know that each time one of us gets a new tool-- portable oxygen, a cane, a wheelchair, a scooter-- that we have to defend these items to the ones that love us and are closest to us. After all, they're still thinking if we only got off our asses and exercised we wouldn't need any of this. We know that's absolute bullshit. With compassion, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Ron, the experiance I had was a reaction to two meds. I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. Just be careful of when you are walking you do not fall. Sharon > > > Date: Thu Aug 7, 4:53 PM > To: Neurosarcoidosis > Subject: MY LEGS!!! > > Lately, I have been experiencing numbness, coldness, stiffness, contractions, weakness and soreness in my legs. I can not stand for long periods of time and can not walk very far without getting tired and breaking out in a heavy sweat. Last week I used a scooter in the grocery store for the first time. It was such a big help but I have always refused the idea/notion of using them. However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY MOBIILITY. Is anyone out their in " Sacr-World " that have experience these same symptoms? Is this possibly a precursor to a wheel chair or a scooter? If so, any suggestions on how long it will be before I have to make that transistion? Your experience and feedback is greatly appreciated. Ron ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Tracie my going to a powrchair was not a complete giving up on walking. I do walk in my home, I do try to walk outside, but when your broken back says you have done to much and fores you to the ground and I do mean falling, you use a chair of some sort. Just because you use a powerchair or scooter to go from the parking lot to running round in a store with no pain, no hjurting for the first time in your likfe and the freedom of not ahving to be pushed by some idiot that doesn't know how in the H to push you with out getting your feet into the door frame or door itself. I do not like it when people say those of you in powerchiars or wheelchairs or scooters are giving up walking. No, what we are giving up is the pain and the agony that walking does cause and a better and freer pain free life. I prefer to try and go without Vicoden every four hours. Giving up no, just like to enjoy life a hell of a lot better. Sorry but that statement of poeple giving up and using powrchairs and scooters makes me about as mad as mad can get. We are not giving up what we are getting is a lot more freedom than denial will ever give you. Sorry for the cussing but I got a little hot under the collar. Forgive me. Sharon > > From: tiodaat@... > Date: Thu Aug 7, 5:04 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Ron, > > I don't know if this is the precursor to the wheelchair or scooter phase of > this disease. I for one, choose the denial route right now. I keep thinking > that if I can hold out without needing the cane, or getting on the scooter at > the store, that I can keep myself strong enough to fight that off. > > I know many on the list have graduated to canes and gocarts. I also know > that some days, I am so weak that I really want to use the gocart in the store. > > You know that I keep you in my heart and prayers. > > Love to you dear friend, > Tracie > > Ron, I don't know if this is the precursor to the wheelchair or scooter phase of this disease. I for one, choose the denial route right now. I keep thinking that if I can hold out without needing the cane, or getting on the scooter at the store, that I can keep myself strong enough to fight that off. I know many on the list have graduated to canes and gocarts. I also know that some days, I am so weak that I really want to use the gocart in the store. You know that I keep you in my heart and prayers. Love to you dear friend, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 It sure came across that way. I have had a very hard time accepting this one myself, it wasn't easy going from an active cat showing, soccer playing grandma with the grandkids, to all of a sudden not walking couldn't even crawl to the bathroom when needed and then to top it off not one family member to help with anything, and I do mean not one family member to help with anything. Not even my husband. He still isn't helping with anything. I just hope I can get my SSD he is out of my life. the good for nothing bum,. Sorry but I still cannot forgive him for his lack of sensitivity. Sharon Re: MY LEGS!!! Sharon, That's not what I'm saying. I don't in any way, shape or form think that someone in a wheelchair, powerchair, or in my words--gocart choose to be there. I am not that niave. I know very well, that it is just a matter of time before i too HAVE to use one of these tools. My denial is that I don't want to accept that thought as my reality. Not yet anyhow. I also understand your anger. You need your chair, and it has afforded you a freedom of mobility that you wouldn't have without it. I am so thankful that I'm not there yet. I also know that each time one of us gets a new tool-- portable oxygen, a cane, a wheelchair, a scooter-- that we have to defend these items to the ones that love us and are closest to us. After all, they're still thinking if we only got off our asses and exercised we wouldn't need any of this. We know that's absolute bullshit. With compassion, Tracie Sharon Alan Rickman Fan -- This message was sent using 3wmail. Your fast free POP3 mail client at www.3wmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 It sure came across that way. I have had a very hard time accepting this one myself, it wasn't easy going from an active cat showing, soccer playing grandma with the grandkids, to all of a sudden not walking couldn't even crawl to the bathroom when needed and then to top it off not one family member to help with anything, and I do mean not one family member to help with anything. Not even my husband. He still isn't helping with anything. I just hope I can get my SSD he is out of my life. the good for nothing bum,. Sorry but I still cannot forgive him for his lack of sensitivity. Sharon Re: MY LEGS!!! Sharon, That's not what I'm saying. I don't in any way, shape or form think that someone in a wheelchair, powerchair, or in my words--gocart choose to be there. I am not that niave. I know very well, that it is just a matter of time before i too HAVE to use one of these tools. My denial is that I don't want to accept that thought as my reality. Not yet anyhow. I also understand your anger. You need your chair, and it has afforded you a freedom of mobility that you wouldn't have without it. I am so thankful that I'm not there yet. I also know that each time one of us gets a new tool-- portable oxygen, a cane, a wheelchair, a scooter-- that we have to defend these items to the ones that love us and are closest to us. After all, they're still thinking if we only got off our asses and exercised we wouldn't need any of this. We know that's absolute bullshit. With compassion, Tracie Sharon Alan Rickman Fan -- This message was sent using 3wmail. Your fast free POP3 mail client at www.3wmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 It sure came across that way. I have had a very hard time accepting this one myself, it wasn't easy going from an active cat showing, soccer playing grandma with the grandkids, to all of a sudden not walking couldn't even crawl to the bathroom when needed and then to top it off not one family member to help with anything, and I do mean not one family member to help with anything. Not even my husband. He still isn't helping with anything. I just hope I can get my SSD he is out of my life. the good for nothing bum,. Sorry but I still cannot forgive him for his lack of sensitivity. Sharon Re: MY LEGS!!! Sharon, That's not what I'm saying. I don't in any way, shape or form think that someone in a wheelchair, powerchair, or in my words--gocart choose to be there. I am not that niave. I know very well, that it is just a matter of time before i too HAVE to use one of these tools. My denial is that I don't want to accept that thought as my reality. Not yet anyhow. I also understand your anger. You need your chair, and it has afforded you a freedom of mobility that you wouldn't have without it. I am so thankful that I'm not there yet. I also know that each time one of us gets a new tool-- portable oxygen, a cane, a wheelchair, a scooter-- that we have to defend these items to the ones that love us and are closest to us. After all, they're still thinking if we only got off our asses and exercised we wouldn't need any of this. We know that's absolute bullshit. With compassion, Tracie Sharon Alan Rickman Fan -- This message was sent using 3wmail. Your fast free POP3 mail client at www.3wmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Ron, I am so sorry that you are having so much trouble with your legs. Less than a week ago I was in the same boat, however like many of my symptoms, It has lessened some what. I have not had to use my cane all week and actually sat down on my front steps and was able to get up without help. I do not know how long this will last but enjoying it while it does. I ahd been extremely worried about my legs, felt like I was about a day away from a wheelchair. Questioned all doctors and was finally sent to orthopedic surgeon, his opinion was that it was all neurological. I am not sure if I TOTALLY agree with that because my bones sure hurt a lot, but nothing was popping and cracking the day that I saw him. Don't have any answers for you because I can't find any for myself. Just wanted to let you know that I understand what it's like to be afraid of losing your mobility. Good luck Elodia -- - In Neurosarcoidosis , " J. Blanchett " <rblanchett@s...> wrote: > Lately, I have been experiencing numbness, coldness, stiffness, > contractions, weakness and soreness in my legs. I can not stand for > long periods of time and can not walk very far without getting tired > and breaking out in a heavy sweat. > > Last week I used a scooter in the grocery store for the first time. > It was such a big help but I have always refused the idea/notion of > using them. > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > MOBIILITY. > > Is anyone out their in " Sacr-World " that have experience these same > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > If so, any suggestions on how long it will be before I have to make > that transistion? > > Your experience and feedback is greatly appreciated. > > Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Ron, I've had aching pain in both legs for 2-1/2 years, but the past few months it has intensified, especially in my right hip and thigh. Twice in the last month, it has gotten so severe that I couldn't stand for more than a few minutes and even sitting with my legs elevated didn't help. It's a little better when I stretch out lying down, but still hurts. It got bad yesterday morning and I spent all day and last night lying down. I couldn't even sit up to check email, read or watch TV. About noon today I found some Darvocet of my mom's and took two of them. After about 3 hours, I was able to sit up enough to drive Sam & to Vacation Bible School. came up to for VBS and Sam is helping. I stayed, but had to sit most of the evening. It's starting to hurt again, so I'm trying to get through some of these messages. Personally, I think it's a sarc thing. I've have degenerative back pain for years & this feels different. Hope yours comes & goes like mine, mostly goes! Rose MY LEGS!!! > Lately, I have been experiencing numbness, coldness, stiffness, > contractions, weakness and soreness in my legs. I can not stand for > long periods of time and can not walk very far without getting tired > and breaking out in a heavy sweat. > > Last week I used a scooter in the grocery store for the first time. > It was such a big help but I have always refused the idea/notion of > using them. > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > MOBIILITY. > > Is anyone out their in " Sacr-World " that have experience these same > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > If so, any suggestions on how long it will be before I have to make > that transistion? > > Your experience and feedback is greatly appreciated. > > Ron > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Rose, I had a ruptured disc, and the Sarc pain is much different like you say then the Sarc pain. My back pain did not come and go, it was just there. The Sarc pain can be much worse too. I get it in my hips too, especially if I drive very much! I think it's Neuro pain!! Marla Re: MY LEGS!!! Ron, I've had aching pain in both legs for 2-1/2 years, but the past few months it has intensified, especially in my right hip and thigh. Twice in the last month, it has gotten so severe that I couldn't stand for more than a few minutes and even sitting with my legs elevated didn't help. It's a little better when I stretch out lying down, but still hurts. It got bad yesterday morning and I spent all day and last night lying down. I couldn't even sit up to check email, read or watch TV. About noon today I found some Darvocet of my mom's and took two of them. After about 3 hours, I was able to sit up enough to drive Sam & to Vacation Bible School. came up to for VBS and Sam is helping. I stayed, but had to sit most of the evening. It's starting to hurt again, so I'm trying to get through some of these messages. Personally, I think it's a sarc thing. I've have degenerative back pain for years & this feels different. Hope yours comes & goes like mine, mostly goes! Rose MY LEGS!!! > Lately, I have been experiencing numbness, coldness, stiffness, > contractions, weakness and soreness in my legs. I can not stand for > long periods of time and can not walk very far without getting tired > and breaking out in a heavy sweat. > > Last week I used a scooter in the grocery store for the first time. > It was such a big help but I have always refused the idea/notion of > using them. > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > MOBIILITY. > > Is anyone out their in " Sacr-World " that have experience these same > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > If so, any suggestions on how long it will be before I have to make > that transistion? > > Your experience and feedback is greatly appreciated. > > Ron > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Thank you for taking the time to respond to my concern. I really appreicate your comments and situation as well. Ron > > Lately, I have been experiencing numbness, coldness, stiffness, > > contractions, weakness and soreness in my legs. I can not stand > for > > long periods of time and can not walk very far without getting > tired > > and breaking out in a heavy sweat. > > > > Last week I used a scooter in the grocery store for the first > time. > > It was such a big help but I have always refused the idea/notion of > > using them. > > > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > > MOBIILITY. > > > > Is anyone out their in " Sacr-World " that have experience these same > > symptoms? Is this possibly a precursor to a wheel chair or a > scooter? > > > > If so, any suggestions on how long it will be before I have to make > > that transistion? > > > > Your experience and feedback is greatly appreciated. > > > > Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hey " Mama Dog " ! So nice to hear from you again. You are always their for everyone, inspite of your on challenges. I agree with you totally, it is a " Sarc-Thang " . However, it could be a Prednisone-Thang as well. I do have avascualr necrosis in both of my shoulders. Not fun! Take care my " Sarc-sista " and its always nice to hear from you. I hope you understand " Ebonics " ! :0)! Ron > Ron, I've had aching pain in both legs for 2-1/2 years, but the past few > months it has intensified, especially in my right hip and thigh. Twice in > the last month, it has gotten so severe that I couldn't stand for more than > a few minutes and even sitting with my legs elevated didn't help. It's a > little better when I stretch out lying down, but still hurts. It got bad > yesterday morning and I spent all day and last night lying down. I > couldn't even sit up to check email, read or watch TV. About noon today I > found some Darvocet of my mom's and took two of them. After about 3 hours, > I was able to sit up enough to drive Sam & to Vacation Bible School. > came up to for VBS and Sam is helping. I stayed, but had to > sit most of the evening. It's starting to hurt again, so I'm trying to get > through some of these messages. Personally, I think it's a sarc thing. > I've have degenerative back pain for years & this feels different. Hope > yours comes & goes like mine, mostly goes! Rose > MY LEGS!!! > > > > Lately, I have been experiencing numbness, coldness, stiffness, > > contractions, weakness and soreness in my legs. I can not stand for > > long periods of time and can not walk very far without getting tired > > and breaking out in a heavy sweat. > > > > Last week I used a scooter in the grocery store for the first time. > > It was such a big help but I have always refused the idea/notion of > > using them. > > > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > > MOBIILITY. > > > > Is anyone out their in " Sacr-World " that have experience these same > > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > > > If so, any suggestions on how long it will be before I have to make > > that transistion? > > > > Your experience and feedback is greatly appreciated. > > > > Ron > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives and Digest Attachment Pictures:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Bookmarks:- > > Add a website URL you have found useful. > > http://groups.yahoo.com/group/Neurosarcoidosis/links > > > > Personal Complaints or problems:- > > Please email the moderators > > mailto:Neurosarcoidosis-owner > > > > Subscription Details:- > > 1) Individual email - means that every email sent to the list you receive. > > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > > To modify your subscription settings please visit:- > > http://groups.yahoo.com/group/Neurosarcoidosis/join > > > > To subscribe email neurosarcoidosis-subscribe > > To unsubscribe email neurosarcoidosis-unsubscribe > > > > The moderators will not be doing it for you! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > Come stand by my side where I am going, > > Take my hand if I should stumble and fall, > > It's the strength and love that you share, > > That gives me what I need most of all. > > - Hoyt Axton > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hey Tracie, I concur totally! I have on many occasions refused to use the scooter and the cane. However, when my vertigo and vestibular problems were overwhelming I had to resort to using the cane. I don't mind it now. But now I have graduated to the scooter. I have only used it once, but it makes a tremendous difference in my shopping-fatigue. Normally when I get to the check out line I am drenched in sweat, exhausted and have to rest before I can go any further. Even though the good LORD always blesses me with a very short line. After checking out I have to rest again before I proceed to my Handicapp parking space. Then get in the car, turn on the air conditioner and rest for another 10-15 minutes with the cool air hitting my body! How refreshing. Now! With the scooter, I bypass most of this. So once I got over my pride, and my mind-associated stigma I was able to shop, ride and enjoy myself as well as the coutesies everyone extends you for being disabled. HA! Ron Thanks Friend. > Ron, > > I don't know if this is the precursor to the wheelchair or scooter phase of > this disease. I for one, choose the denial route right now. I keep thinking > that if I can hold out without needing the cane, or getting on the scooter at > the store, that I can keep myself strong enough to fight that off. > > I know many on the list have graduated to canes and gocarts. I also know > that some days, I am so weak that I really want to use the gocart in the store. > > You know that I keep you in my heart and prayers. > > Love to you dear friend, > Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 once I got over my pride, and my mind-associated stigma I was able to shop, ride and enjoy myse Ron, I am so glad that you have allowed yourself to rise above pride. Even tho pride is both a blessing and a curse-so to speak, I think that for me, I still am fighting giving up some of the illusionary control I tell myself I have. It's good to see you posting. We've missed you. BTW- I took a lump sum settlement about 5 years ago from my employer (it was on a workcomp claim that was 17 yrs old)-- and I figured that I would have enough money to pay for my therapy and massage for probably 7 years or so. It did give us the ability to purchase our home (at least put the down payment), and then it paid for my massage for 3 years and a couple of years of therapy-- but honestly- that money is gone. And the bills of massage and therapy still go on. I don't know what we would have done if I hadn't gotten my long-term disability from the time I worked for the phone company. You also need to take into consideration that you will never be able to afford private health insurance, and even if you recovered suffiencently from the sarc to be able to work, that any job you accepted would have to be guaranteed enrollment health insurance-- so no small privately owned employment. Even your wife would be possibly passed over for promotion or employment if the company had to inherit you as one of the insured. These things happened to us. I know that hasselling with the constant stuff your employer's insurance comes up with is an ongoing stress, but I would say if you can handle it-- keep the monthly stipend. Love to you, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hey " Stasecase " ! I agree with the hot bath therapy. I have bath salts that soothes the mucles, arouse the senese and smoothe the body. I use one in particular that has camphor and eucalyptus in its ingredients. It helps with muscle soarness, open my pours, open my sinues and gives me a clean invigorating feeling! I can sit in the hot salt bath for and hour and fall asleep. Yes it truly does work. However, the only draw back is getting out of the bath tub. I use EXTREME CAUTION! I am always afraid of falling due to my weakness, poor balance and the soapy bath tub. So I don't bathe often, unless I am really zonked!!! I use take showers. But the standing can be equally exhausting as well. But after a hot aromatherapy bath, and a good catherization, I sleep like a baby! No middle of the night urinating, which is a pain in itself, especially when you are incontinent and have a neurogenic bladder. The pain I have is bilateral in my shoulders, hips, thighs, legs and sometimes ankles. And not to forget lumbar-sacral!!! This is the source of it all I truly believe. But you kbnow what, if I take a good hot salt-bath and drink a half of glass of red wine, I SLEEP LIKE A BEAR IN HIBERNATION! Here, here! Thanks for you concern and feedback. " Ronnie B " > Hi: > > Yes, unfortunately I suffer from the same leg issues. I was so alarmed in > the beginning I had my dr write a script for me to have a bone scan b/c I was > convinced I had bone cancer b/c the pain is so intense. I dont have bone cancer > thank god, but what my rheum. said is that I have the sarcoid granulomas in > the soft tissues of my legs, which is causing the pain. I do take pain > medication, but something that really helps is a warm bath with aveeno in it. The > coloidal oatmeal is a natural relaxant and it does wonders for the pain. Do you > have the pain in both your thighs?..thats where my pain is, in the upper > legs......I cant stay on my feet for long, or even walk the mall for very long > without having to get to the car to lay down. > > I hope you feel better. > > Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hey " Topdat " ! I can't top that! You are absolutely correct. I agree with you totally. Its all relative. First I lost my verility, then my balance, then my hearing, them my job, then my pride. And each time I thought to myself how can I be a man with my verility?! How can I survive in a hearing world and be deaf?! How can I take care of myself and my family without being employed?! But I have come to realize that its all relative. Even the wheelchair, the scooter or even blindness, GOD forbid. HE has equipped me and slowly prepared me for all that I must endure. HE truly is the " Source Of My Strength. " Now can anyone TOP THAT!!!!! Ron, in HIS Service, FOREVER AND EVER! Amen! Let all the members of the BODY say Amen, amen, amen! > Hey Ron, Sorry your having trouble with your legs, its a scarry thought, but > one which I understand totally. > I have had trouble with this horrible pain in my lower back and hips down > both legs since the onsought of my disease... I can only walk a few feet now > without the help of a quad cane.. and no more than about 30 ft with it...so > for my long walks from parking lots to doctors offices I have to either have > someone that will help hold on to me or.. take a scooter...which I can't get > out of my vehicle unless someone is with me...to get it out for me... I don > t like having to count on help as I am still young yet.. at 46 but I do > enjoy the liberty and freedom and the ability I get from not struggling as > much while trying to ambulate more than I know I can..comfortably... Its > your decision.. I was self concious at first.. but now.. Its just a way of > life... > > Good to see you posting, > > > > -- MY LEGS!!! > > Lately, I have been experiencing numbness, coldness, stiffness, > contractions, weakness and soreness in my legs. I can not stand for > long periods of time and can not walk very far without getting tired > and breaking out in a heavy sweat. > > Last week I used a scooter in the grocery store for the first time. > It was such a big help but I have always refused the idea/notion of > using them. > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > MOBIILITY. > > Is anyone out their in " Sacr-World " that have experience these same > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > If so, any suggestions on how long it will be before I have to make > that transistion? > > Your experience and feedback is greatly appreciated. > > Ron > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Ron, in most cases yes you are shown coutersy. then you get the inconsiderate nincompoops that don't acre and stop in front of you and then whap. You got them. Or the ones that make turns in front of you without even looking to go down a different aisle. the ones that park in the crossed lines for side mount ramps or lifts to go down and you are stuck until they come out from shopping. Best remedy for that one is praying there is a fine attached to the handicap parking sign and then you got them. Call 911 on the cell phone have them get the police there and have the vehicle towed while they are gone. Many a time has this been done. Oh, Yes, Owner's expense also. You may want to check with the doctor to get your own scooter or powerchair. Lifts are out of pocket for the vehicles. A brand new handicap accessible mini van lowered floor, and side ramp, kneely is roughly 50,000.00 and the mini van itself depending on the features is roughly 25 to 30,000.00 the rest is making it accessible. Stap lifts are cheaper until you cannot handle that any longer. Sharon > > Date: Sat Aug 9, 4:20 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Hey Tracie, I concur totally! I have on many occasions refused to use the scooter and the cane. However, when my vertigo and vestibular problems were overwhelming I had to resort to using the cane. I don't mind it now. But now I have graduated to the scooter. I have only used it once, but it makes a tremendous difference in my shopping-fatigue. Normally when I get to the check out line I am drenched in sweat, exhausted and have to rest before I can go any further. Even though the good LORD always blesses me with a very short line. After checking out I have to rest again before I proceed to my Handicapp parking space. Then get in the car, turn on the air conditioner and rest for another 10-15 minutes with the cool air hitting my body! How refreshing. Now! With the scooter, I bypass most of this. So once I got over my pride, and my mind-associated stigma I was able to shop, ride and enjoy myself as well as the coutesies everyone extends you for being disabled. HA! Ron Thanks Friend. > Ron, > > I don't know if this is the precursor to the wheelchair or scooter phase of > this disease. I for one, choose the denial route right now. I keep thinking > that if I can hold out without needing the cane, or getting on the scooter at > the store, that I can keep myself strong enough to fight that off. > > I know many on the list have graduated to canes and gocarts. I also know > that some days, I am so weak that I really want to use the gocart in the store. > > You know that I keep you in my heart and prayers. > > Love to you dear friend, > Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 I was explained it was a for runnerof the types of Sarcoidosis I have now. Lung and skin but the verdict is still out as to where else it is. I am afraid it maybe the bone, they way I can break them. I do not have the NS that I know of. Sharon > > > Date: Sat Aug 9, 4:55 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 I was explained it was a for runnerof the types of Sarcoidosis I have now. Lung and skin but the verdict is still out as to where else it is. I am afraid it maybe the bone, they way I can break them. I do not have the NS that I know of. Sharon > > > Date: Sat Aug 9, 4:55 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Ron,I'm right there with you friend. I hate it too, I am almost off, after being on 3 years, and am ready to be off. It's one of those Love/hate relationships, you love how it helps but hate what it does. But I am so with you on now wanting to do it again, try something else, there just has to be something else? Love ya, marla MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Ron,I'm right there with you friend. I hate it too, I am almost off, after being on 3 years, and am ready to be off. It's one of those Love/hate relationships, you love how it helps but hate what it does. But I am so with you on now wanting to do it again, try something else, there just has to be something else? Love ya, marla MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
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