Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 , I am Greg age 45 From Texas Diag with Neurosarcoidosis a Year ago. I can only say that I empathize with you. I am still learning all about this BS disease. I will say this I will add you to my prayers and wish you many pain free days as possible. I know Tracie and Rose and others will answer questions better then I. So may you be blessed. Greg aka Krumdawg > > > Hello everyone... > > I'm ...age 46 from Indianapolis and I was a member before and I've > been living with sarcoidosis for 11 years now and it attacked my central > nervous system about 9 years ago I left the group because I just wanted to > get away from anything or anyone having to do with this disease and attempt > to try to forget that I had it but wow this disease is so dreadful it won't > not even for a minute allow you to forget...geesh I have been through so > much since attacking my nervous system I have peripheral neuropathy and > couldn't even walk for 2 years but though I'm walking I stagger like crazy! > UGH! > > I have fallen and broke my elbow and my ankle in the past due to the > neuropathy and have fallen many other times but I managed to get up without > too much damage though it hurt. > > I've had plasma freesis or whatever it's called lol and I've had this other > thing done where you go in and they UT the iv in until the fluid is used but > my memory is bad now so I can't remember what it was called which is another > thing...bad memory. > > My eyesight is bad and I get legions around my nose which I go get > injections for that hurts like heck! The doc says that I even have legions > in my brain so go figure. > > I have a new thing that is happening now... > > The skin on my face has developed light spots!? > > What the hey is going on! > > I am so mad at this disease! > > It has and continues to destroy my life and oh yeah I'm on disabilty! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Well since Desert Sheild/Storm I think because as I study Neurosarcoidosis I find that I have had symptoms since May 1992. I think I know the cause tho I can not prove it. A little untested (at that Time) pill to help us resist certain gas nerve agents. It was known as the BP pill. They say no side effects except for during use in high heat and stress can cause brain damage possiblly. Diag. with neurosarcoidosis May 8 2008 after it sidelined me hard. and I am also on disability. > > > > > > Hello everyone... > > > > I'm ...age 46 from Indianapolis and I was a member before and I > ve > > been living with sarcoidosis for 11 years now and it attacked my central > > nervous system about 9 years ago I left the group because I just wanted to > > get away from anything or anyone having to do with this disease and > attempt > > to try to forget that I had it but wow this disease is so dreadful it won > t > > not even for a minute allow you to forget...geesh I have been through so > > much since attacking my nervous system I have peripheral neuropathy and > > couldn't even walk for 2 years but though I'm walking I stagger like > crazy! > > UGH! > > > > I have fallen and broke my elbow and my ankle in the past due to the > > neuropathy and have fallen many other times but I managed to get up > without > > too much damage though it hurt. > > > > I've had plasma freesis or whatever it's called lol and I've had this > other > > thing done where you go in and they UT the iv in until the fluid is used > but > > my memory is bad now so I can't remember what it was called which is > another > > thing...bad memory. > > > > My eyesight is bad and I get legions around my nose which I go get > > injections for that hurts like heck! The doc says that I even have legions > > in my brain so go figure. > > > > I have a new thing that is happening now... > > > > The skin on my face has developed light spots!? > > > > What the hey is going on! > > > > I am so mad at this disease! > > > > It has and continues to destroy my life and oh yeah I'm on disabilty! > > > > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > 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 May 20, 2009 Report Share Posted May 20, 2009 Hello everyone... I'm ...age 46 from Indianapolis and I was a member before and I've been living with sarcoidosis for 11 years now and it attacked my central nervous system about 9 years ago I left the group because I just wanted to get away from anything or anyone having to do with this disease and attempt to try to forget that I had it but wow this disease is so dreadful it won't not even for a minute allow you to forget...geesh I have been through so much since attacking my nervous system I have peripheral neuropathy and couldn't even walk for 2 years but though I'm walking I stagger like crazy! UGH! I have fallen and broke my elbow and my ankle in the past due to the neuropathy and have fallen many other times but I managed to get up without too much damage though it hurt. I've had plasma freesis or whatever it's called lol and I've had this other thing done where you go in and they UT the iv in until the fluid is used but my memory is bad now so I can't remember what it was called which is another thing...bad memory. My eyesight is bad and I get legions around my nose which I go get injections for that hurts like heck! The doc says that I even have legions in my brain so go figure. I have a new thing that is happening now... The skin on my face has developed light spots!? What the hey is going on! I am so mad at this disease! It has and continues to destroy my life and oh yeah I'm on disabilty! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Hello Greg and thanks! How long have you had this dreaded sarcoidosis? -- Re: Hello , I am Greg age 45 From Texas Diag with Neurosarcoidosis a Year ago. I can only say that I empathize with you. I am still learning all about this BS disease. I will say this I will add you to my prayers and wish you many pain free days as possible. I know Tracie and Rose and others will answer questions better then I. So may you be blessed. Greg aka Krumdawg > > > Hello everyone... > > I'm ...age 46 from Indianapolis and I was a member before and I've > been living with sarcoidosis for 11 years now and it attacked my central > nervous system about 9 years ago I left the group because I just wanted to > get away from anything or anyone having to do with this disease and attempt > to try to forget that I had it but wow this disease is so dreadful it won't > not even for a minute allow you to forget...geesh I have been through so > much since attacking my nervous system I have peripheral neuropathy and > couldn't even walk for 2 years but though I'm walking I stagger like crazy! > UGH! > > I have fallen and broke my elbow and my ankle in the past due to the > neuropathy and have fallen many other times but I managed to get up without > too much damage though it hurt. > > I've had plasma freesis or whatever it's called lol and I've had this other > thing done where you go in and they UT the iv in until the fluid is used but > my memory is bad now so I can't remember what it was called which is another > thing...bad memory. > > My eyesight is bad and I get legions around my nose which I go get > injections for that hurts like heck! The doc says that I even have legions > in my brain so go figure. > > I have a new thing that is happening now... > > The skin on my face has developed light spots!? > > What the hey is going on! > > I am so mad at this disease! > > It has and continues to destroy my life and oh yeah I'm on disabilty! > ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... 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 May 20, 2009 Report Share Posted May 20, 2009 Wow Greg...I'm always sorry to hear about anyone having this disease. I want it to just go-away :-( I don't know about you or anyone else here that receives disability but I miss working and though I mange to get out of the house on occasion this new thing with the skin discoloration on my face...I may become a hermit and stay in all the time...it's embarassing. -- Re: Hello Well since Desert Sheild/Storm I think because as I study Neurosarcoidosis I find that I have had symptoms since May 1992. I think I know the cause tho I can not prove it. A little untested (at that Time) pill to help us resist certain gas nerve agents. It was known as the BP pill. They say no side effects except for during use in high heat and stress can cause brain damage possiblly. Diag. with neurosarcoidosis May 8 2008 after it sidelined me hard. and I am also on disability. > > > > > > Hello everyone... > > > > I'm ...age 46 from Indianapolis and I was a member before and I > ve > > been living with sarcoidosis for 11 years now and it attacked my central > > nervous system about 9 years ago I left the group because I just wanted to > > get away from anything or anyone having to do with this disease and > attempt > > to try to forget that I had it but wow this disease is so dreadful it won > t > > not even for a minute allow you to forget...geesh I have been through so > > much since attacking my nervous system I have peripheral neuropathy and > > couldn't even walk for 2 years but though I'm walking I stagger like > crazy! > > UGH! > > > > I have fallen and broke my elbow and my ankle in the past due to the > > neuropathy and have fallen many other times but I managed to get up > without > > too much damage though it hurt. > > > > I've had plasma freesis or whatever it's called lol and I've had this > other > > thing done where you go in and they UT the iv in until the fluid is used > but > > my memory is bad now so I can't remember what it was called which is > another > > thing...bad memory. > > > > My eyesight is bad and I get legions around my nose which I go get > > injections for that hurts like heck! The doc says that I even have legions > > in my brain so go figure. > > > > I have a new thing that is happening now... > > > > The skin on my face has developed light spots!? > > > > What the hey is going on! > > > > I am so mad at this disease! > > > > It has and continues to destroy my life and oh yeah I'm on disabilty! > > > > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > 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 May 20, 2009 Report Share Posted May 20, 2009 Hi, This is I have been a member since the start of the group. Remember Ahisha? I wish I knew how she was.. I think I remember you .Sorry things are not going well with you. I have good a bad days.Take care, Hello Hello everyone... I'm ...age 46 from Indianapolis and I was a member before and I've been living with sarcoidosis for 11 years now and it attacked my central nervous system about 9 years ago I left the group because I just wanted to get away from anything or anyone having to do with this disease and attempt to try to forget that I had it but wow this disease is so dreadful it won't not even for a minute allow you to forget...geesh I have been through so much since attacking my nervous system I have peripheral neuropathy and couldn't even walk for 2 years but though I'm walking I stagger like crazy! UGH! I have fallen and broke my elbow and my ankle in the past due to the neuropathy and have fallen many other times but I managed to get up without too much damage though it hurt. I've had plasma freesis or whatever it's called lol and I've had this other thing done where you go in and they UT the iv in until the fluid is used but my memory is bad now so I can't remember what it was called which is another thing...bad memory. My eyesight is bad and I get legions around my nose which I go get injections for that hurts like heck! The doc says that I even have legions in my brain so go figure. I have a new thing that is happening now... The skin on my face has developed light spots!? What the hey is going on! I am so mad at this disease! It has and continues to destroy my life and oh yeah I'm on disabilty! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Jackie, I'm not sure which of the Jackie's you are-- were you the one that is close friends with Kim? I know we'd all love to believe this disease can just "go away." Sadly, it doesn't. I do know that many of the problems can be addressed, and for me, that is what empowers me to keep on doing. I've had excellant success by really watching my diet, getting rid of the gluten and dairy and processed foods. I also have to avoid high fructose corn syrup. Those changes have helped both the sarc induced arthritis, as well as the neuropathy-- and made it so that I don't need the Neurontin. Hydration is another key, any minor electroylyte imbalance is amplified-- so making sure that all the joints and ligaments and muscles can float is so important. You probably remember me touting MSM Powder. I take PURE MSM several times a day-- and it really helps with the pain. All of us remember the DMSO-- and how it was the wonder drug-- then FDA decided we can use it on our animals, but not on people. The M is MSM-- a natural mineral that use to be in our soils, and in our foods. Processing (microwave, cooking, freezing) zaps out what little bit is in the food. We dont' replace it in our soil-- so it is depleted. It is essential for cartlidge and muscle and ligament health. As you know, all the mods and owners are sick also, so give us a day or two, and someone iwll come in and answer your questions. Take care, and welcome back Tracie NS Co-owner/moderator Subject: Re: Re: HelloTo: Neurosarcoidosis Date: Tuesday, May 19, 2009, 11:45 PM Hello Greg and thanks! How long have you had this dreaded sarcoidosis? -- Re: Hello , I am Greg age 45 From Texas Diag with Neurosarcoidosis a Year ago. I can only say that I empathize with you. I am still learning all about this BS disease. I will say this I will add you to my prayers and wish you many pain free days as possible. I know Tracie and Rose and others will answer questions better then I. So may you be blessed. Greg aka Krumdawg > > > Hello everyone... > > I'm .. .age 46 from Indianapolis and I was a member before and I've > been living with sarcoidosis for 11 years now and it attacked my central > nervous system about 9 years ago I left the group because I just wanted to > get away from anything or anyone having to do with this disease and attempt > to try to forget that I had it but wow this disease is so dreadful it won't > not even for a minute allow you to forget...geesh I have been through so > much since attacking my nervous system I have peripheral neuropathy and > couldn't even walk for 2 years but though I'm walking I stagger like crazy! > UGH! > > I have fallen and broke my elbow and my ankle in the past due to the > neuropathy and have fallen many other times but I managed to get up without > too much damage though it hurt. > > I've had plasma freesis or whatever it's called lol and I've had this other > thing done where you go in and they UT the iv in until the fluid is used but > my memory is bad now so I can't remember what it was called which is another > thing...bad memory. > > My eyesight is bad and I get legions around my nose which I go get > injections for that hurts like heck! The doc says that I even have legions > in my brain so go figure. > > I have a new thing that is happening now... > > The skin on my face has developed light spots!? > > What the hey is going on! > > I am so mad at this disease! > > It has and continues to destroy my life and oh yeah I'm on disabilty! > ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time..... Message Archives:- http://groups. yahoo.com/ group/Neurosarco idosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups. yahoo.com/ group/Neurosarco idosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Jacquelin, Aisha, I think that was how you spelled her name, She started the group and played the piano. Didn't you live in the mountains and cut your on fire word ? Hello Hello everyone... I'm ...age 46 from Indianapolis and I was a member before and I've been living with sarcoidosis for 11 years now and it attacked my central nervous system about 9 years ago I left the group because I just wanted to get away from anything or anyone having to do with this disease and attempt to try to forget that I had it but wow this disease is so dreadful it won't not even for a minute allow you to forget...geesh I have been through so much since attacking my nervous system I have peripheral neuropathy and couldn't even walk for 2 years but though I'm walking I stagger like crazy! UGH! I have fallen and broke my elbow and my ankle in the past due to the neuropathy and have fallen many other times but I managed to get up without too much damage though it hurt. I've had plasma freesis or whatever it's called lol and I've had this other thing done where you go in and they UT the iv in until the fluid is used but my memory is bad now so I can't remember what it was called which is another thing...bad memory. My eyesight is bad and I get legions around my nose which I go get injections for that hurts like heck! The doc says that I even have legions in my brain so go figure. I have a new thing that is happening now... The skin on my face has developed light spots!? What the hey is going on! I am so mad at this disease! It has and continues to destroy my life and oh yeah I'm on disabilty! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hello and hmm was it Kim who came here for the Sarc thing in Indianapolis...she asked me to go considering I live here but I was down at the time...and I never heard of using msm powder...or I don't remember since the ole memory isn't like it was lol and my heart and prayers go out to the mods and members who are down right now boy do I know how you feel...this disease really sucks! -- Re: Hello , I am Greg age 45 From Texas Diag with Neurosarcoidosis a Year ago. I can only say that I empathize with you. I am still learning all about this BS disease. I will say this I will add you to my prayers and wish you many pain free days as possible. I know Tracie and Rose and others will answer questions better then I. So may you be blessed. Greg aka Krumdawg > > > Hello everyone... > > I'm .. .age 46 from Indianapolis and I was a member before and I've > been living with sarcoidosis for 11 years now and it attacked my central > nervous system about 9 years ago I left the group because I just wanted to > get away from anything or anyone having to do with this disease and attempt > to try to forget that I had it but wow this disease is so dreadful it won't > not even for a minute allow you to forget...geesh I have been through so > much since attacking my nervous system I have peripheral neuropathy and > couldn't even walk for 2 years but though I'm walking I stagger like crazy! > UGH! > > I have fallen and broke my elbow and my ankle in the past due to the > neuropathy and have fallen many other times but I managed to get up without > too much damage though it hurt. > > I've had plasma freesis or whatever it's called lol and I've had this other > thing done where you go in and they UT the iv in until the fluid is used but > my memory is bad now so I can't remember what it was called which is another > thing...bad memory. > > My eyesight is bad and I get legions around my nose which I go get > injections for that hurts like heck! The doc says that I even have legions > in my brain so go figure. > > I have a new thing that is happening now... > > The skin on my face has developed light spots!? > > What the hey is going on! > > I am so mad at this disease! > > It has and continues to destroy my life and oh yeah I'm on disabilty! > ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time..... Message Archives:- http://groups. yahoo.com/ group/Neurosarco idosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups. yahoo.com/ group/Neurosarco idosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hello Jackie...I know what you mean I want to see my granny's grow to be adults too...I have 1 son age 28 and 2 girls ages 22 and 23 and I have 5 grandsons! I actually didn't think I'd be here to see my youngest daughter graduate from college and well 2 more months so we'll see. I must admit most are my smiles are superficial. Lol Thank God for your husband Greg...serving our country! I know that desert storm was hard of a lot of soldiers...I pray he's fairing well and you keep smiling too and keeping you also in prayer. -- Re: Re: Hello Hi I am Jackie from Wisconsin. I am 58 and have this malady since '06 I Have much of the same symptoms as you do. It is a challenge everyday. I have to keep on the high side. I want to live to see my grandchildren have children or more. I am not on any infusion but I take so many meds that sometimes I can't keep them down. Just thinking of them turns me ill. Keep smiling and Keep trying. Greg, my husband was in that 4 day desert storm for 10 long months. It was terrible and I never want him to go through that again. 2 wars are enough. (he was in Nam too) It is such a shame they don't really know what causes this. I blame the medical field, I was a CNA for 20 years. You both take care and know my prayers are with you. Bless you both. Jackie Re: Hello Well since Desert Sheild/Storm I think because as I study Neurosarcoidosis I find that I have had symptoms since May 1992. I think I know the cause tho I can not prove it. A little untested (at that Time) pill to help us resist certain gas nerve agents. It was known as the BP pill. They say no side effects except for during use in high heat and stress can cause brain damage possiblly. Diag. with neurosarcoidosis May 8 2008 after it sidelined me hard. and I am also on disability. > > > > > > Hello everyone... > > > > I'm ...age 46 from Indianapolis and I was a member before and I > ve > > been living with sarcoidosis for 11 years now and it attacked my central > > nervous system about 9 years ago I left the group because I just wanted to > > get away from anything or anyone having to do with this disease and > attempt > > to try to forget that I had it but wow this disease is so dreadful it won > t > > not even for a minute allow you to forget...geesh I have been through so > > much since attacking my nervous system I have peripheral neuropathy and > > couldn't even walk for 2 years but though I'm walking I stagger like > crazy! > > UGH! > > > > I have fallen and broke my elbow and my ankle in the past due to the > > neuropathy and have fallen many other times but I managed to get up > without > > too much damage though it hurt. > > > > I've had plasma freesis or whatever it's called lol and I've had this > other > > thing done where you go in and they UT the iv in until the fluid is used > but > > my memory is bad now so I can't remember what it was called which is > another > > thing...bad memory. > > > > My eyesight is bad and I get legions around my nose which I go get > > injections for that hurts like heck! The doc says that I even have legions > > in my brain so go figure. > > > > I have a new thing that is happening now... > > > > The skin on my face has developed light spots!? > > > > What the hey is going on! > > > > I am so mad at this disease! > > > > It has and continues to destroy my life and oh yeah I'm on disabilty! > > > > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > 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 May 21, 2009 Report Share Posted May 21, 2009 Tracie I do believe it was that you were talking to. lol I never though there was another Jackie. Jackie from Wisconsin Re: Hello , I am Greg age 45 From Texas Diag with Neurosarcoidosis a Year ago. I can only say that I empathize with you. I am still learning all about this BS disease. I will say this I will add you to my prayers and wish you many pain free days as possible. I know Tracie and Rose and others will answer questions better then I. So may you be blessed. Greg aka Krumdawg > > > Hello everyone... > > I'm .. .age 46 from Indianapolis and I was a member before and I've > been living with sarcoidosis for 11 years now and it attacked my central > nervous system about 9 years ago I left the group because I just wanted to > get away from anything or anyone having to do with this disease and attempt > to try to forget that I had it but wow this disease is so dreadful it won't > not even for a minute allow you to forget...geesh I have been through so > much since attacking my nervous system I have peripheral neuropathy and > couldn't even walk for 2 years but though I'm walking I stagger like crazy! > UGH! > > I have fallen and broke my elbow and my ankle in the past due to the > neuropathy and have fallen many other times but I managed to get up without > too much damage though it hurt. > > I've had plasma freesis or whatever it's called lol and I've had this other > thing done where you go in and they UT the iv in until the fluid is used but > my memory is bad now so I can't remember what it was called which is another > thing...bad memory. > > My eyesight is bad and I get legions around my nose which I go get > injections for that hurts like heck! The doc says that I even have legions > in my brain so go figure. > > I have a new thing that is happening now... > > The skin on my face has developed light spots!? > > What the hey is going on! > > I am so mad at this disease! > > It has and continues to destroy my life and oh yeah I'm on disabilty! > ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time..... Message Archives:- http://groups. yahoo.com/ group/Neurosarco idosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups. yahoo.com/ group/Neurosarco idosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 , I think it was me you are thinking of. I live in . I don't know about the skin thing; do yhou have a dermatologist that's familiar with sarc? I know there are many different skin manifestations. Do you see the sarc docs at IUMC? Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: jackie3740@...Date: Thu, 21 May 2009 06:39:01 -0700Subject: Re: Re: Hello Hello and hmm was it Kim who came here for the Sarc thing in Indianapolis...she asked me to go considering I live here but I was down at the time...and I never heard of using msm powder...or I don't remember since the ole memory isn't like it was lol and my heart and prayers go out to the mods and members who are down right now boy do I know how you feel...this disease really sucks! -- Re: Hello , I am Greg age 45 From Texas Diag with Neurosarcoidosis a Year ago. I can only say that I empathize with you. I am still learning all about this BS disease. I will say this I will add you to my prayers and wish you many pain free days as possible. I know Tracie and Rose and others will answer questions better then I. So may you be blessed. Greg aka Krumdawg > > > Hello everyone... > > I'm .. .age 46 from Indianapolis and I was a member before and I've > been living with sarcoidosis for 11 years now and it attacked my central > nervous system about 9 years ago I left the group because I just wanted to > get away from anything or anyone having to do with this disease and attempt > to try to forget that I had it but wow this disease is so dreadful it won't > not even for a minute allow you to forget...geesh I have been through so > much since attacking my nervous system I have peripheral neuropathy and > couldn't even walk for 2 years but though I'm walking I stagger like crazy! > UGH! > > I have fallen and broke my elbow and my ankle in the past due to the > neuropathy and have fallen many other times but I managed to get up without > too much damage though it hurt. > > I've had plasma freesis or whatever it's called lol and I've had this other > thing done where you go in and they UT the iv in until the fluid is used but > my memory is bad now so I can't remember what it was called which is another > thing...bad memory. > > My eyesight is bad and I get legions around my nose which I go get > injections for that hurts like heck! The doc says that I even have legions > in my brain so go figure. > > I have a new thing that is happening now... > > The skin on my face has developed light spots!? > > What the hey is going on! > > I am so mad at this disease! > > It has and continues to destroy my life and oh yeah I'm on disabilty! > ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time..... Message Archives:- http://groups. yahoo.com/ group/Neurosarco idosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups. yahoo.com/ group/Neurosarco idosis/database Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.