Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Hi just thought i should check in- been fairy sick this past month- my headaches have come back fairly strong along with a lot of pain in legs and arms- also have to have eye surgery on oct 16th -it will be my fifth eye sugery in the past year- Docs keep uping my prednisone but not sure it is helping- other then that i am doing ok- not much new up here in seattle- MATT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Matt, best wishes for your eye surgery. Sorry to hear you've been sick...Beckybelltown_mac wrote: Hi just thought i should check in- been fairy sick this past month- my headaches have come back fairly strong along with a lot of pain in legs and arms- also have to have eye surgery on oct 16th -it will be my fifth eye sugery in the past year- Docs keep uping my prednisone but not sure it is helping- other then that i am doing ok- not much new up here in seattle- MATT Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Matt, I am so glad you checked in. We've been wondering what is up. I take it the glaucoma is up again. I suspect that a big part of the headaches. It can be a sign of high intra-ocular pressure. You definately need more than the prednisone. Will your MD's look at the steroid sparing alternatives? Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 --- tiodaat@... wrote: > Matt, > > I am so glad you checked in. We've been wondering > what is up. I take it the > glaucoma is up again. I suspect that a big part of > the headaches. It can be > a sign of high intra-ocular pressure. > > You definately need more than the prednisone. Will > your MD's look at the > steroid sparing alternatives? > > Take care, > Tracie > NS Co-owner/moderator > Hi Tracie-have asked several times for different treatment options but they dont respond-am looking into going somewhere else again for a second opinion - I also assume it is my eyes causing the headaches MATT __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 --- Mac Tosh macandtosh626@...> wrote: > Matt, best wishes for your eye surgery. Sorry to > hear you've been sick...Becky > thanks for the support- will be glad when i get over this next eye surgery MATT > belltown_mac belltown_mac@...> wrote: > Hi just thought i should > check in- been fairy sick this past month- my > headaches have come > back fairly strong along with a lot of pain in legs > and arms- also have to have eye surgery on > oct 16th -it will be my fifth eye sugery in the > past year- Docs keep uping my prednisone but > not sure it is helping- other then that i am doing > ok- not much new up here in seattle- MATT > > > > > > > --------------------------------- > Stay in the know. Pulse on the new Yahoo.com. Check > it out. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Matt, Seattle has a sarcoidosis center. Look at Sarcoidosissharma.com and you should find an address. I'm sure that you can get the help you need. They were one of the sites chosen for the Remicade clinical trial-- so there is someone there that is interested in this disease. Take care, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 I have tried several times to go to the sarc center at the univ of Wash hospitals but they only take referreals and my docs and insurance refuse to do that claiming they can treat me just as well-have even offeresd rto pay out of pocket and they wont take me as they say they are already over burdened with the cases thet have- that is why i have gone down to Nat Jewish in Denver for medical treatment- kind of amazes me that i live in Seattle and cant even get see them - MATT --- tiodaat@... wrote: > Matt, > > Seattle has a sarcoidosis center. Look at > Sarcoidosissharma.com and you > should find an address. I'm sure that you can get > the help you need. They were > one of the sites chosen for the Remicade clinical > trial-- so there is someone > there that is interested in this disease. > > Take care, > Tracie > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Matt, This is just another of the many frustrations that we come up against, isn't it. It sounds like you have an HMO plan--have you been out of work for 2 yrs? Do you have Medicare primary yet? I would think that with your SSDI coming thru- that you should be close. I know it's a haul-- and we all know that we don't have the energy for those long trips-- but if that is what it'll take to get into someone that will look at alternative care options-- it is worth it. Take care, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hey Matt, Sorry to hear you aren't doing so well. It sounds like the sarc has got a hold of you all over. It's unusual that the prednisone isn't working, unless they aren't giving you a big enough dosage. We will be praying for you on the 16th. Hopefully, after that you can start to feel more like yourself.Hugs,Debbie T.Moderatorbelltown_mac wrote: Hi just thought i should check in- been fairy sick this past month- my headaches have come back fairly strong along with a lot of pain in legs and arms- also have to have eye surgery on oct 16th -it will be my fifth eye sugery in the past year- Docs keep uping my prednisone but not sure it is helping- other then that i am doing ok- not much new up here in seattle- MATT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Hi Debbie- part of the problem was they cut back on the prednisone and soon after my problems started up again- they have upped it again so i am beginning to feel better MATT --- Debbie rozebudz36@...> wrote: > Hey Matt, > Sorry to hear you aren't doing so well. It > sounds like the sarc has got a hold of you all over. > It's unusual that the prednisone isn't working, > unless they aren't giving you a big enough dosage. > We will be praying for you on the 16th. Hopefully, > after that you can start to feel more like yourself. > Hugs, > Debbie T. > Moderator > > belltown_mac belltown_mac@...> wrote: Hi > just thought i should check in- been fairy sick this > past month- my headaches have come > back fairly strong along with a lot of pain in legs > and arms- also have to have eye surgery on > oct 16th -it will be my fifth eye sugery in the past > year- Docs keep uping my prednisone but > not sure it is helping- other then that i am doing > ok- not much new up here in seattle- MATT > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM > CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM > CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM > CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. > 1PM PST > > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > 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 October 13, 2006 Report Share Posted October 13, 2006 Hi I do hjave medicare but it is through my HMO and so they get to deciede what medical services I can use outside of there health services, and they rarely let someone get treatment outside of there own docs MATT --- tiodaat@... wrote: > Matt, > > This is just another of the many frustrations that > we come up against, isn't > it. It sounds like you have an HMO plan--have you > been out of work for 2 yrs? > Do you have Medicare primary yet? I would think > that with your SSDI coming > thru- that you should be close. > > I know it's a haul-- and we all know that we don't > have the energy for those > long trips-- but if that is what it'll take to get > into someone that will > look at alternative care options-- it is worth it. > > Take care, > Tracie > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Matt Can you opt out for regular Part A & Part B Medicare. Does your ex-employer have a plan that allows you to carry them as secondary insurer. This would definately give you more choices--and actually if you called the HMO- and requested to talk to the care nurse-- and explained that you have multisystem sarcoidosis and need a second opinion-- get the ok that way to look into outside care. The HMO world is so screwed-- it's great coverage-- but those "Gate-keepers" sure don't want to open the gate-- and for you- in means inadequate care. Anyway, (its a personal tyraid) Tracie : ) Quote Link to comment Share on other sites More sharing options...
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