Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 Dah, I think the problem was that I had not signed on so I hope my post goes through this time Anne Re: [Neurosa Re: Digest Number 4633 Saturday, September 20, 2008 4:45 AM From: "Anne Schmidt" To: "No Reply" <notify-dg-Neurosarcoidosis > Hi this is Anne, I posted the e-mail about trigeminal neuraligia. it seems recently more information is available about TN recently the chicago tribune had an article and it described the symptoms (mine) exactly and the different treatments focusing on the gamma knife procedure I have asked my docs about it but with all my conditions it would not even be considered unless it were non-stop, I can't even imagine having that pain constantly I sure wouldn't need a gamma knife to correct the problem? Sorry for the negativity but I am currently in a rehab center to help with my weakness this is a latch resort to try something that might help me out of this lack of strength before I am bed-ridden. If I may vent because i am scared. Aside from the nsarc I have TN adrenal insufficiency with frequent bouts of adrenal crisis which is very serious I have to make to the hospital asap before I go into a coma, it was close twice and now my small village emts are aware of this condition and know how to deal with me I call 911. I also have hypopituitarism, thyroid problems have had a stroke, hyponetrimia ( low sodium) fibromyalgia and now a rare infection called micobacterium chelonae a cousin of TB And to top it all off I am steroid dependent I had to get this out and certainly donot want to scare anyone but this is all due to the neuoscarc what a demon. So here i am at 4am at least in a private room in a nursing home trying to be positive but i cannot stop crying because I am so scared. I am not looking for sympathy but understanding from those who understand and are dealing with this demon also. Thanks for listening and all of you are in prayers. sarc friend Anne From: Neurosarcoidosis <Neurosarcoidosis >Subject: Digest Number 4638To: Neurosarcoidosis Date: Saturday, September 20, 2008, 4:58 AM A home of loving support for anyone living with neurosarcoidosis or wanting more information on this rare disease. Messages In This Digest (5 Messages) 1a. Re: thyroid From: mosaicgirl1 2a. Re: pain question From: ashdownhill 2b. Re: pain question From: tracie feldhaus 3a. Re: dr appt From: Debbie 3b. Re: dr appt From: tracie feldhaus View All Topics | Create New Topic Messages 1a. Re: thyroid Posted by: "mosaicgirl1" mosaicgirl1@... mosaicgirl1 Fri Sep 19, 2008 6:01 am (PDT) Tracie,I have had the neuropsych tests which shows I cannot multi task, slowprocessing etc but since they can't find anything on MRI, it must bepsychosomatic. They really piss me off. Since my new rheumy is afemale, I am hoping when I speak with her next week that I can reach herin ways I have been unable to with the male docs (the only exception ismy urologist). If she could just understand I don't want thisdisability, that I want treatment to be able to function in my life. Ihave had some positive test results, but they are positive then negativethen positive again.Well, I appreciate your friendship and assistance and I will let youknow what happens.Terri G.>> Sarc can effect the thyroid as well as the parathyroid glands. Theparathyroids control calcium levels.> Why did they decide Cytoxan wasn't for you? I know you were doingwell on it. What about the other BRM's? Enbrel, Humira or Remicade--and now there is a new one-- don't know much about it. What aboutImuran or Arava or Plaquenil and Methotrexate? Have they given theseany thought.> So the MRI showed arthritis-- they use these same drugs for that. Check out> www.ArthritisToday. org or and look up the drug guide. There is somuch wonderful info.> Here is an excellant article on sarcoidosis and the endocrine system,it includes all the glands that are controlled (including thyroid) andexplains alot of what is going on.> http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553 Print itout and take it with you to the Rheumi.> It sounds as if she wants to rerun all the tests and figure outexactly what is going on--- that's great if you have good insurance, butif you already have biopsy proven sarc-- it's not totally necessary.> I know she wants to make sure that nothing is "masking" what is goingon-- so she doesn't get any false positives (or negatives) behindwhatever autoimmune process is going on. She'll want to exclude all theother possiblities before she treats with more than pred.> I wouldn't worry about the "it's all in your head" theory-- just lether know that you want her to help you get this puzzle figured out-- andthat you know that it's not in your head. If you are dealing with somedepression, it would be secondary to whatever is going on-- not the rootcause of what is going on.> Remember that you understand that with chronic pain, chronic illnessthat yes, depression can become an issue, and that you know that yourseratonin and norephnephrine hormones can get whacked out by the chronicpain and disruption of sleep cycles, etc-- but that "if you knew whatwas going on with your body, and had some relief via treatment-- andCytoxan was doing that; that you'd be alot more comfortable. With theprevious doc, he wanted to go to the depression issue and blow off thesarc induced problems (arthritis) and you know that is not right." Don't back down-- work with her, talk to her, and let her know that youstudy on this disease--and you want her to be part of your healingteam-- not the competition. Get her on your side!> Hope this helps,> Tracie NS Co-owner/moderator>>>> thyroid>>>> Hey Guys,>> Is the thyroid suseptible to sarcoid. I am still having lots of> negative blood tests and MRI's but the vitamin D and thyroid are off.I> am starting up with this new rheumatologist and my first visit she> brought up the fact that one idiot thought it was in my head and also> said that I looked healthy as a horse. Doesn't bode well for me does> it?>> I am trying not to get upset; I am seeing her next week. She doesn't> know that I know the MRI's just showed arthritis. Another doc let it> slip (they were not aware I had not received the results yet) during a> visit. She is going to let me have a prednisone IM injection but she> will discuss treatment with me next week.>> Please say a prayer for me that there will be some type of resolution.> I have accepted the fact that I will not be able to get Cytoxananymore> but there has got to be something out there for me. I had even> entertained the idea during the cytoxan treatment that I may be ableto> go back to work or to school. That is out now....>> Well, thanks for listening guys. I really appreciate it.>> Terri G.> Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (12) Visit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Early Detection Know the symptoms of breast cancer. Biz Resources Y! Small Business Articles, tools, forms, and more. Need to Reply? Click one of the "Reply" links to respond to a specific message in the Daily Digest. Create New Topic | Visit Your Group on the Web Messages ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.sarcbuddies.com/chat 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 September 20, 2008 Report Share Posted September 20, 2008 Anne, I am so sorry that all of this crap you are going through. Please know you are in my prayers for strength and hope and healing. Please feel free to vent at anytime you want. We are here for you. Terri G. > > > > Sarc can effect the thyroid as well as the parathyroid glands. The > parathyroids control calcium levels. > > Why did they decide Cytoxan wasn't for you? I know you were doing > well on it. What about the other BRM's? Enbrel, Humira or Remicade-- > and now there is a new one-- don't know much about it. What about > Imuran or Arava or Plaquenil and Methotrexate? Have they given these > any thought. > > So the MRI showed arthritis-- they use these same drugs for that. > Check out > > www.ArthritisToday. org or and look up the drug guide. There is so > much wonderful info. > > Here is an excellant article on sarcoidosis and the endocrine system, > it includes all the glands that are controlled (including thyroid) and > explains alot of what is going on. > > http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553 Print it > out and take it with you to the Rheumi. > > It sounds as if she wants to rerun all the tests and figure out > exactly what is going on--- that's great if you have good insurance, but > if you already have biopsy proven sarc-- it's not totally necessary. > > I know she wants to make sure that nothing is " masking " what is going > on-- so she doesn't get any false positives (or negatives) behind > whatever autoimmune process is going on. She'll want to exclude all the > other possiblities before she treats with more than pred. > > I wouldn't worry about the " it's all in your head " theory-- just let > her know that you want her to help you get this puzzle figured out-- and > that you know that it's not in your head. If you are dealing with some > depression, it would be secondary to whatever is going on-- not the root > cause of what is going on. > > Remember that you understand that with chronic pain, chronic illness > that yes, depression can become an issue, and that you know that your > seratonin and norephnephrine hormones can get whacked out by the chronic > pain and disruption of sleep cycles, etc-- but that " if you knew what > was going on with your body, and had some relief via treatment-- and > Cytoxan was doing that; that you'd be alot more comfortable. With the > previous doc, he wanted to go to the depression issue and blow off the > sarc induced problems (arthritis) and you know that is not right. " > Don't back down-- work with her, talk to her, and let her know that you > study on this disease--and you want her to be part of your healing > team-- not the competition. Get her on your side! > > Hope this helps, > > Tracie NS Co-owner/moderator > > > > > > > > thyroid > > > > > > > > Hey Guys, > > > > Is the thyroid suseptible to sarcoid. I am still having lots of > > negative blood tests and MRI's but the vitamin D and thyroid are off. > I > > am starting up with this new rheumatologist and my first visit she > > brought up the fact that one idiot thought it was in my head and also > > said that I looked healthy as a horse. Doesn't bode well for me does > > it? > > > > I am trying not to get upset; I am seeing her next week. She doesn't > > know that I know the MRI's just showed arthritis. Another doc let it > > slip (they were not aware I had not received the results yet) during a > > visit. She is going to let me have a prednisone IM injection but she > > will discuss treatment with me next week. > > > > Please say a prayer for me that there will be some type of resolution. > > I have accepted the fact that I will not be able to get Cytoxan > anymore > > but there has got to be something out there for me. I had even > > entertained the idea during the cytoxan treatment that I may be able > to > > go back to work or to school. That is out now.... > > > > Well, thanks for listening guys. I really appreciate it. > > > > Terri G. > > > > > > Back to top Reply to sender | Reply to group | Reply via web post > Messages in this topic (12) > > > Visit Your Group > > > Meditation and > Lovingkindness > A Yahoo! Group > to share and learn. > > Yahoo! Health > Early Detection > Know the symptoms > of breast cancer. > > Biz Resources > Y! Small Business > Articles, tools, > forms, and more. > > > Need to Reply? > Click one of the " Reply " links to respond to a specific message in the Daily Digest. > Create New Topic | Visit Your Group on the Web > Messages > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > CHATROOM LINK: http://www.sarcbuddies.com/chat > > 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 September 20, 2008 Report Share Posted September 20, 2008 HI Anne, Sounds like you are having a veery rough time right now. Hang in there, Tracie thyroid> >> >> >> > Hey Guys,> >> > Is the thyroid suseptible to sarcoid. I am still having lots of> > negative blood tests and MRI's but the vitamin D and thyroid areoff.> I> > am starting up with this new rheumatologist and my first visit she> > brought up the fact that one idiot thought it was in my head andalso> > said that I looked healthy as a horse. Doesn't bode well for me does> > it?> >> > I am trying not to get upset; I am seeing her next week. She doesn't> > know that I know the MRI's just showed arthritis. Another doc let it> > slip (they were not aware I had not received the results yet) duringa> > visit. She is going to let me have a prednisone IM injection but she> > will discuss treatment with me next week.> >> > Please say a prayer for me that there will be some type ofresolution.> > I have accepted the fact that I will not be able to get Cytoxan> anymore> > but there has got to be something out there for me. I had even> > entertained the idea during the cytoxan treatment that I may be able> to> > go back to work or to school. That is out now....> >> > Well, thanks for listening guys. I really appreciate it.> >> > Terri G.> >>>>> Back to top Reply to sender | Reply to group | Reply via web post> Messages in this topic (12)>>> Visit Your Group>>> Meditation and> Lovingkindness> A Yahoo! Group> to share and learn.>> Yahoo! Health> Early Detection> Know the symptoms> of breast cancer.>> Biz Resources> Y! Small Business> Articles, tools,> forms, and more.>>> Need to Reply?> Click one of the "Reply" links to respond to a specific message in theDaily Digest.> Create New Topic | Visit Your Group on the Web> Messages> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME> CHATROOM LINK: http://www.sarcbudd ies.com/chat>> 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 September 24, 2008 Report Share Posted September 24, 2008 >i want you and everyone else my prayers are with you all. i've had NS for 11 yrs. i have good days & bad days.i'd rather have a few good days than all bad. it sucks no one knows more about this condition, but i feel blessed to know i'm not the only one w/this condition and there are groups like this which help a lot. thank you from the bottom of my heart. > > > > > > > > , > > > > > > > > > > > > > > > > > > Re: Digest Number 4633 > > Saturday, September 20, 2008 4:45 AM > > > > > > > > From: > > > > " Anne Schmidt " annabanana60546@ ... > > > > > > > > To: > > " No Reply " notify-dg-Neurosarc oidosis@yahoogro ups.com > > > > > > > > > > > > > > Hi this is Anne, I posted the e-mail about trigeminal neuraligia. it > seems recently more information is available about TN recently the > chicago tribune had an article and it described the symptoms (mine) > exactly and the different treatments focusing on the gamma knife > procedure I have asked my docs about it but with all my conditions it > would not even be considered unless it were non-stop, I can't even > imagine having that pain constantly I sure wouldn't need a gamma knife > to correct the problem? Sorry for the negativity but I am currently in a > rehab center to help with my weakness this is a latch resort to try > something that might help me out of this lack of strength before I am > bed-ridden. If I may vent because i am scared. Aside from the nsarc I > have TN adrenal insufficiency with frequent bouts of adrenal crisis > which is very serious I have to make to the hospital asap before I go > into a coma, it was close twice and now my small village emts are aware > > of this condition and know how to deal with me I call 911. I also have > hypopituitarism, thyroid problems have had a stroke, hyponetrimia ( low > sodium) fibromyalgia and now a rare infection called micobacterium > chelonae a cousin of TB And to top it all off I am steroid dependent I > had to get this out and certainly donot want to scare anyone but this is > all due to the neuoscarc what a demon. So here i am at 4am at least in a > private room in a nursing home trying to be positive but i cannot stop > crying because I am so scared. I am not looking for sympathy but > understanding from those who understand and are dealing with this demon > also. Thanks for listening and all of you are in prayers. sarc friend > Anne > > > > > > > > From: Neurosarcoidosis@ yahoogroups. com > Neurosarcoidosis@ yahoogroups. com > > Subject: Digest Number 4638 > > To: Neurosarcoidosis@ yahoogroups. com > > Date: Saturday, September 20, 2008, 4:58 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > A home of loving support for anyone living with neurosarcoidosis or > wanting more information on this rare disease. > > > > Messages In This Digest (5 Messages) > > > > > > 1a. > > Re: thyroid From: mosaicgirl1 > > > > 2a. > > Re: pain question From: ashdownhill > > 2b. > > Re: pain question From: tracie feldhaus > > > > 3a. > > Re: dr appt From: Debbie > > 3b. > > Re: dr appt From: tracie feldhaus > > View All Topics | Create New Topic > > Messages > > > > > > 1a. > > > > Re: thyroid > > Posted by: " mosaicgirl1 " mosaicgirl1@ ... mosaicgirl1 > > Fri Sep 19, 2008 6:01 am (PDT) > > > > Tracie, > > > > I have had the neuropsych tests which shows I cannot multi task, slow > > processing etc but since they can't find anything on MRI, it must be > > psychosomatic. They really piss me off. Since my new rheumy is a > > female, I am hoping when I speak with her next week that I can reach > her > > in ways I have been unable to with the male docs (the only exception > is > > my urologist). If she could just understand I don't want this > > disability, that I want treatment to be able to function in my life. I > > have had some positive test results, but they are positive then > negative > > then positive again. > > > > Well, I appreciate your friendship and assistance and I will let you > > know what happens. > > > > Terri G. > > > > > > > > Sarc can effect the thyroid as well as the parathyroid glands. The > > parathyroids control calcium levels. > > > Why did they decide Cytoxan wasn't for you? I know you were doing > > well on it. What about the other BRM's? Enbrel, Humira or Remicade-- > > and now there is a new one-- don't know much about it. What about > > Imuran or Arava or Plaquenil and Methotrexate? Have they given these > > any thought. > > > So the MRI showed arthritis-- they use these same drugs for that. > > Check out > > > www.ArthritisToday. org or and look up the drug guide. There is so > > much wonderful info. > > > Here is an excellant article on sarcoidosis and the endocrine > system, > > it includes all the glands that are controlled (including thyroid) and > > explains alot of what is going on. > > > http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553 Print > it > > out and take it with you to the Rheumi. > > > It sounds as if she wants to rerun all the tests and figure out > > exactly what is going on--- that's great if you have good insurance, > but > > if you already have biopsy proven sarc-- it's not totally necessary. > > > I know she wants to make sure that nothing is " masking " what is > going > > on-- so she doesn't get any false positives (or negatives) behind > > whatever autoimmune process is going on. She'll want to exclude all > the > > other possiblities before she treats with more than pred. > > > I wouldn't worry about the " it's all in your head " theory-- just let > > her know that you want her to help you get this puzzle figured out-- > and > > that you know that it's not in your head. If you are dealing with some > > depression, it would be secondary to whatever is going on-- not the > root > > cause of what is going on. > > > Remember that you understand that with chronic pain, chronic illness > > that yes, depression can become an issue, and that you know that your > > seratonin and norephnephrine hormones can get whacked out by the > chronic > > pain and disruption of sleep cycles, etc-- but that " if you knew what > > was going on with your body, and had some relief via treatment-- and > > Cytoxan was doing that; that you'd be alot more comfortable. With the > > previous doc, he wanted to go to the depression issue and blow off the > > sarc induced problems (arthritis) and you know that is not right. " > > Don't back down-- work with her, talk to her, and let her know that > you > > study on this disease--and you want her to be part of your healing > > team-- not the competition. Get her on your side! > > > Hope this helps, > > > Tracie NS Co-owner/moderator > > > > > > > > > > > > thyroid > > > > > > > > > > > > Hey Guys, > > > > > > Is the thyroid suseptible to sarcoid. I am still having lots of > > > negative blood tests and MRI's but the vitamin D and thyroid are > off. > > I > > > am starting up with this new rheumatologist and my first visit she > > > brought up the fact that one idiot thought it was in my head and > also > > > said that I looked healthy as a horse. Doesn't bode well for me does > > > it? > > > > > > I am trying not to get upset; I am seeing her next week. She doesn't > > > know that I know the MRI's just showed arthritis. Another doc let it > > > slip (they were not aware I had not received the results yet) during > a > > > visit. She is going to let me have a prednisone IM injection but she > > > will discuss treatment with me next week. > > > > > > Please say a prayer for me that there will be some type of > resolution. > > > I have accepted the fact that I will not be able to get Cytoxan > > anymore > > > but there has got to be something out there for me. I had even > > > entertained the idea during the cytoxan treatment that I may be able > > to > > > go back to work or to school. That is out now.... > > > > > > Well, thanks for listening guys. I really appreciate it. > > > > > > Terri G. > > > > > > > > > > > Back to top Reply to sender | Reply to group | Reply via web post > > Messages in this topic (12) > > > > > > Visit Your Group > > > > > > Meditation and > > Lovingkindness > > A Yahoo! Group > > to share and learn. > > > > Yahoo! Health > > Early Detection > > Know the symptoms > > of breast cancer. > > > > Biz Resources > > Y! Small Business > > Articles, tools, > > forms, and more. > > > > > > Need to Reply? > > Click one of the " Reply " links to respond to a specific message in the > Daily Digest. > > Create New Topic | Visit Your Group on the Web > > Messages > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > > CHATROOM LINK: http://www.sarcbudd ies.com/chat > > > > 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.