Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 Hi, Sue, and welcome. Where in the U.K. do you live? I know we've had 2 or 3 members in the past; not sure if they are still active on the list. Hopefully, someone will see this message & post. I checked on our Links section & was unable to find a support group listed for the U.K., but did find 2 doctors in London & one in Wales who are sarc specialists. Here is the link, and at the bottom of the opening page is a section for Sarcoidosis doctors. If you click that, the next page has USA on the left & international on the right. Go to U.K. near the bottom of the right column & click to see info on those doctors. http://www.sarcoidosisonlinesites.com There may be support groups or other docs that are just not listed on this resource. Another good website is: http://www.stopsarcoidosis.org/ Do you feel like your medical team is up to date on treatment of neurologic sarc? There have been some radical changes in treatment options in the past few years. I'm glad you found us. This is a great place to get information, support, be able to vent, etc. I know that other members will be responding to your message, but just remember that we are all in varying stages of dis-ease, so sometimes it takes a day or two, even longer, for some of us to respond. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: new here,Date: Wed, 07 Feb 2007 09:21:22 -0000 Hi i am a women living in uk age 40,I have been having lots problems with my eyes, legs,kidney (had one removed)and also brain inflammation for over 14 years now first thought it was M.S and went through a brain op to reduce pressure.And after lots of IV steroids always 5 days course and then prednislone.I was feeling a little better for a couple of years untill september and all went down hill while away in another country i had some sort of epileptic fit and needed valium to control spasms.I have since been in hospital and had another 5 days methyleprednislone and now on 40mg prednislone along with now imuran and been told this is what i will be left on for minimum 2 years.And hope to get out of this wheel chair at some point.Has anyone any more information on this illness and know of any support groups in the uk.thanks susan x Valentine’s Day -- Shop for gifts that spell L-O-V-E at MSN Shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Sue/Rose and people in the UK Hi, I used to post every now and then, I am from Bristol in the UK. I haven't posted for a few months as ironically I haven't been too good and so haven't been able to keep up with all of the emails. Sue, this is definitely a great site for information. It appears to be a subject, not particularly well-known in the UK. I haven't found a support group in the UK, but you are more than welcome to contact me, if you have any questions that are UK related. Can't promised I can help, but maybe if there were a few of us from the UK we would be able to answer eachother's questions - just a thought if anyone is interested? Becky UK > >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: U.K. members? >Date: Wed, 07 Feb 2007 16:21:33 -0500 > > > > > > > > > > > > > > > > > > > > > > > > > > > > >Hi, Sue, and welcome. Where in the U.K. do you live? I know we've had 2 >or 3 members in the past; not sure if they are still active on the list. >Hopefully, someone will see this message & post. I checked on our Links >section & was unable to find a support group listed for the U.K., but did >find 2 doctors in London & one in Wales who are sarc specialists. Here is >the link, and at the bottom of the opening page is a section for >Sarcoidosis doctors. If you click that, the next page has USA on the left >& international on the right. Go to U.K. near the bottom of the right >column & click to see info on those doctors. > >http://www.sarcoidosisonlinesites.com > >There may be support groups or other docs that are just not listed on this >resource. Another good website is: > >http://www.stopsarcoidosis.org/ > > >Do you feel like your medical team is up to date on treatment of neurologic >sarc? There have been some radical changes in treatment options in the >past few years. > >I'm glad you found us. This is a great place to get information, support, >be able to vent, etc. I know that other members will be responding to your >message, but just remember that we are all in varying stages of dis-ease, >so sometimes it takes a day or two, even longer, for some of us to respond. > >Ramblin' Rose > > >Moderator > > > >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: new here, >Date: Wed, 07 Feb 2007 09:21:22 -0000 > > > > > > > >Hi i am a women living in uk age 40,I have been having lots problems >with my eyes, legs,kidney (had one removed)and also brain inflammation >for over 14 years now first thought it was M.S and went through a brain >op to reduce pressure.And after lots of IV steroids always 5 days >course and then prednislone.I was feeling a little better for a couple >of years untill september and all went down hill while away in another >country i had some sort of epileptic fit and needed valium to control >spasms.I have since been in hospital and had another 5 days >methyleprednislone and now on 40mg prednislone along with now imuran >and been told this is what i will be left on for minimum 2 years.And >hope to get out of this wheel chair at some point. >Has anyone any more information on this illness and know of any support >groups in the uk. > >thanks susan x > > > > > > Valentine’s Day -- Shop for gifts that spell L-O-V-E at MSN Shopping > > > > > > > > > > > > > > > _________________________________________________________________ MSN Hotmail is evolving – check out the new Windows Live Mail http://ideas.live.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Hello, I've never posted on this site before and only just found it recently. I'm also from Bristol in the UK, and wanted to reply to your email. I've had sarcoid since 97 and it seems to be getting worse at the moment. I did recently come across a UK based support group, although I haven't been in contact as they're in London. It's called SILA, and the web address is http://www.sila.org.uk . I don't really know what they're like, but the website seems ok, and they send newsletters out every now and then. It looks as though they run a London support group and one in the Midlands, but I don't know if these are still up and running. I was going to get in touch to see what they're like, and will get back with any info. I'm about to change my meds at the moment, and the specialist has said he may try inflaximab which I know people on this site have been talking about. Hopefully that will change things, as at the moment, it all just seems to be going downhill. Feel free to get in touch. I've not spoken to anyone else whose had neurosarcoid before, and most people have never heard of it. Mark > > Sue/Rose and people in the UK > > Hi, > > I used to post every now and then, I am from Bristol in the UK. I haven't > posted for a few months as ironically I haven't been too good and so haven't > been able to keep up with all of the emails. > > Sue, this is definitely a great site for information. It appears to be a > subject, not particularly well-known in the UK. I haven't found a support > group in the UK, but you are more than welcome to contact me, if you have > any questions that are UK related. Can't promised I can help, but maybe if > there were a few of us from the UK we would be able to answer eachother's > questions - just a thought if anyone is interested? > > Becky > UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Hi Mark (and other UK members) Now that you have mentioned it I do recall this group, I would be interested to know anything that you may find out. I posted an email yesterday with my contact email address, which is becky.d@..., feel free to contact me anytime should you want to speak to speak to someone with NS in the area! That goes for any of the members in the UK also. Becky (UK) > >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: Re: U.K. members? >Date: Mon, 12 Feb 2007 10:52:20 -0000 > > >Hello, > >I've never posted on this site before and only just found it >recently. I'm also from Bristol in the UK, and wanted to reply to >your email. I've had sarcoid since 97 and it seems to be getting >worse at the moment. > >I did recently come across a UK based support group, although I >haven't been in contact as they're in London. It's called SILA, and >the web address is http://www.sila.org.uk . I don't really know >what they're like, but the website seems ok, and they send >newsletters out every now and then. It looks as though they run a >London support group and one in the Midlands, but I don't know if >these are still up and running. I was going to get in touch to see >what they're like, and will get back with any info. > >I'm about to change my meds at the moment, and the specialist has >said he may try inflaximab which I know people on this site have >been talking about. Hopefully that will change things, as at the >moment, it all just seems to be going downhill. > >Feel free to get in touch. I've not spoken to anyone else whose had >neurosarcoid before, and most people have never heard of it. > > >Mark > > > > > > > > > > > > Sue/Rose and people in the UK > > > > Hi, > > > > I used to post every now and then, I am from Bristol in the UK. I >haven't > > posted for a few months as ironically I haven't been too good and >so haven't > > been able to keep up with all of the emails. > > > > Sue, this is definitely a great site for information. It appears >to be a > > subject, not particularly well-known in the UK. I haven't found a >support > > group in the UK, but you are more than welcome to contact me, if >you have > > any questions that are UK related. Can't promised I can help, but >maybe if > > there were a few of us from the UK we would be able to answer >eachother's > > questions - just a thought if anyone is interested? > > > > Becky > > UK > > _________________________________________________________________ MSN Hotmail is evolving – check out the new Windows Live Mail http://ideas.live.com Quote Link to comment Share on other sites More sharing options...
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