Guest guest Posted April 14, 2007 Report Share Posted April 14, 2007 Dear Marla....I read of your insurance refusing Remicade. Mine also did and I applied to the drug company and am getting it free. The number of the Program Counselors at Centocor is 1-. Good Luck... this is truely a wonderful drug and it has saved my vision! Ruth > > I've had Sarc since 1994, been in and out of remission, until about 2001, > but in fall o f 2003 I've been dealing with NS. So no remission since 2001 > and it doesn't appear that will happen as NS symptoms continue on. I have > been on Methotrexate since 2003 with Plaquanil, my insurance refused > Remicade so I am just hanging in there, good days and bad days. But I was > blessed with a healing in 11/2005, now this probably doesn't make much > sense, but the healing turned out to be spiritual, more then physical > however, it took the chronic fatigue away and has not returned, so I can't > complain, I can now get through a whole day without napping or feeling just > dead by 3pm. I can take the rest of it, at least so far. > > > > Marla Bramer > > " Faith sees the invisible, believes the incredible and receives the > impossible " > > _____ > > From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of Tony > Sent: Monday, April 09, 2007 10:10 AM > To: Neurosarcoidosis > Subject: Relapsing remitting vs chronic progressive > > > > As I read more and more post, it appears that many here have a > chronic - progressive (CP) form of NS. Personally, and perhaps > fortunately, I believe the NS that I have is more of a relapsing - > remitting (RR) form at the current time. I might go months or even a > year or two between major flares, even though there may be minor > events in between whose symptoms are more of an annoyance than > anything. > > My background: > My first flare hit my peripheral nervous system about 16 years ago > and left me with diminished feeling in my fingers & toes. This is > more of a minor inconvenience than anything else even though it > sometimes tests my patience when I try to manipulate small parts or > tools. Another major flare around 10 years ago was far more > worrisome as it affected my eyes. I recovered fully, or at least I > thought that I did, until another flair around 6 years ago. That > flare resulted in 30 months of doctor visits, multiple tests, and a > diagnosis of `depression' despite having no clinical signs of such. > Sadly, the untreated illness resulted in permanent damage in the form > of chronic diplopia. Now almost every flare affects my already > compromised vision. I realize that the damage may increase with each > subsequent flare. I also realize that other affected organs which > have been asymptomatic up to this point may become problematic as the > damage accumulates during subsequent flares. > > That said, I figure that the more I know, the better off I will be > able to deal with what possibly lies ahead.as if anyone could know. > With MS, resource shows that the majority of patients with RR will > convert to CP within 10 years. I'm wondering if there is a similar > correlation with NS. I haven't located any information on the > internet related to this topic so I thought that I would ask you, the > real experts, some questions: > - What form of NS do you have? > - Anyone else with a long term (>10 years) RR form? > - For those of you with a chronic form of neurosarc.did you start > with the RR form? > - How long before your symptoms became chronic? > > Thanks for sharing.peace to all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Thanks Ruth I will check in to that if my doctor even still wants to use it, I see him this week. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of olehomepla Sent: Saturday, April 14, 2007 9:07 PM To: Neurosarcoidosis Subject: RE: Marla and Remicade Dear Marla....I read of your insurance refusing Remicade. Mine also did and I applied to the drug company and am getting it free. The number of the Program Counselors at Centocor is 1-. Good Luck... this is truely a wonderful drug and it has saved my vision! Ruth > > I've had Sarc since 1994, been in and out of remission, until about 2001, > but in fall o f 2003 I've been dealing with NS. So no remission since 2001 > and it doesn't appear that will happen as NS symptoms continue on. I have > been on Methotrexate since 2003 with Plaquanil, my insurance refused > Remicade so I am just hanging in there, good days and bad days. But I was > blessed with a healing in 11/2005, now this probably doesn't make much > sense, but the healing turned out to be spiritual, more then physical > however, it took the chronic fatigue away and has not returned, so I can't > complain, I can now get through a whole day without napping or feeling just > dead by 3pm. I can take the rest of it, at least so far. > > > > Marla Bramer > > " Faith sees the invisible, believes the incredible and receives the > impossible " > > _____ > > From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of Tony > Sent: Monday, April 09, 2007 10:10 AM > To: Neurosarcoidosis > Subject: Relapsing remitting vs chronic progressive > > > > As I read more and more post, it appears that many here have a > chronic - progressive (CP) form of NS. Personally, and perhaps > fortunately, I believe the NS that I have is more of a relapsing - > remitting (RR) form at the current time. I might go months or even a > year or two between major flares, even though there may be minor > events in between whose symptoms are more of an annoyance than > anything. > > My background: > My first flare hit my peripheral nervous system about 16 years ago > and left me with diminished feeling in my fingers & toes. This is > more of a minor inconvenience than anything else even though it > sometimes tests my patience when I try to manipulate small parts or > tools. Another major flare around 10 years ago was far more > worrisome as it affected my eyes. I recovered fully, or at least I > thought that I did, until another flair around 6 years ago. That > flare resulted in 30 months of doctor visits, multiple tests, and a > diagnosis of `depression' despite having no clinical signs of such. > Sadly, the untreated illness resulted in permanent damage in the form > of chronic diplopia. Now almost every flare affects my already > compromised vision. I realize that the damage may increase with each > subsequent flare. I also realize that other affected organs which > have been asymptomatic up to this point may become problematic as the > damage accumulates during subsequent flares. > > That said, I figure that the more I know, the better off I will be > able to deal with what possibly lies ahead.as if anyone could know. > With MS, resource shows that the majority of patients with RR will > convert to CP within 10 years. I'm wondering if there is a similar > correlation with NS. I haven't located any information on the > internet related to this topic so I thought that I would ask you, the > real experts, some questions: > - What form of NS do you have? > - Anyone else with a long term (>10 years) RR form? > - For those of you with a chronic form of neurosarc.did you start > with the RR form? > - How long before your symptoms became chronic? > > Thanks for sharing.peace to all. > Quote Link to comment Share on other sites More sharing options...
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