Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Hi , Well, you've found a family of over 400 people that have or are going thru the testing you're doing. We have so much info, and knowledge that we are willing to share, and if we don't have an answer-- we'll help look for one. Do you have sarc anywhere other that NS? What treatments have you been on? What tests are they doing? Tell us more, and know that you've come to the right place-- we truly hold hands and hearts with each other-- and the laughter and tears and joys and grief are shared-- and it's all ok. Welcome to the family, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Hello everyone, My name is and I have been going through the crazy process of being diagnosed with neurosarcoidosis. I have more doctors than fingers, my face looks like a tomato, and I pay way too much for care. I have never been involved in any online groups or even done any chat stuff, but I am at the point where I could use some advice and support from people who understand what I am going through. Any words of wisdom? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 Hi . Welcome to the group. The people here are full of information (among other things LOL) and are very caring.grannylunatic@... Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 symptoms for about 2 years now- started with intense headaches, pressure in my head, dizziness, vomiting- the doctor said sinus infection. I felt a little better eventually but sypmtoms would keep coming back with more intensity. The doctors all said sinuses. One doctor told me to stop eating wheat and dairy because I might have developed an allergy. Another doctor told me I had anxiety because the MRIs didn't show anything. In the meantime, I started losing my vision and would become completely incapacitated several times throughout every day by headaches, dizziness, numbness, disorientation and slurred speech. Finally I saw an opthalmologist who said I had pseudotumor cerebri and sent me straight to my neurologist. That's how I got started on steroids and eventually how my neuro realized there was somthing else going on. Headaches, sinus infections, fibromylagia, dementia , anxiety-- yep, you've got alot of it. Bugger is steroids are just the start-- and I hope are helping you. How long have you been on them? What dose? I do hope that they are looking at steroid sparing meds-- Imuran, Methotrexate, Plaquenil-- so that you don't end up developing the diabetes and the osteoporosis. So many of us were told we were depressed, or were having panic attacks, or general anxiety. Don't we wish. Actually the anxiety and depression come from not knowing what is going on with our bodies-- but we know it's not right. I will say this about depression-- it is a secondary condition many of us need help with. When we have the chronic pain and headaches and sarcoid-induced arthritis- we don't get a normal nights sleep. When you don't get enough sleep, the seratonin and norephinephrine hormones in your brain get screwed up, and this makes you depressed. The pain also requires that these two hormones be in sync-- or you won't be sleeping. This is the pain cycle-- so if you need pain meds-- take them. Don't wait until you are in pain-- you use pain meds to control your pain-- not make it stop- because once you are in a pain cycle, it is very, very hard to break out of it. , I preach hydration, hydration, and hydration. This is because we are all experiencing systemic inflammation, and generally most of us run a low grade fever daily. This has a tendency to keep us dehydrated, and even a tiny bit-- and the joints and ligaments are gonna yell at us. Loudly. The other component that for me was top of the list-- when my blood sugar is even high normal- 110-118- my neuropathy is out of control. So I've had to learn to really watch my diet. The lactic acid in dairy products seems to add insult to injury, so if you've found that you hurt more after a grilled cheese sandwich, skip this choice. The Rice Dream milk substitutes are excellant. Let us know how we can help, and we're glad you found us too! Hugs, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 Wow, I am so glad to have found this group of people. I am at work right now and there are tears running down my face because I see so many things in these messages that are familiar to me- things that my friends and family just don't understand. I haven't been 100% diagnosed with neurosarcoid, but all signs point that way. I've been having symptoms for about 2 years now- started with intense headaches, pressure in my head, dizziness, vomiting- the doctor said sinus infection. I felt a little better eventually but sypmtoms would keep coming back with more intensity. The doctors all said sinuses. One doctor told me to stop eating wheat and dairy because I might have developed an allergy. Another doctor told me I had anxiety because the MRIs didn't show anything. In the meantime, I started losing my vision and would become completely incapacitated several times throughout every day by headaches, dizziness, numbness, disorientation and slurred speech. Finally I saw an opthalmologist who said I had pseudotumor cerebri and sent me straight to my neurologist. That's how I got started on steroids and eventually how my neuro realized there was somthing else going on. It's been a crazy trip and there's so much more, but I don't want to bombard you all with the long story. I'm just so happy to have found you all! > > Hi , > Well, you've found a family of over 400 people that have or are going thru > the testing you're doing. > We have so much info, and knowledge that we are willing to share, and if we > don't have an answer-- we'll help look for one. > Do you have sarc anywhere other that NS? What treatments have you been on? > What tests are they doing? > Tell us more, and know that you've come to the right place-- we truly hold > hands and hearts with each other-- and the laughter and tears and joys and grief > are shared-- and it's all ok. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > > ************************************** > See what's free > at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Hi ! Nice to meet you.grannylunatic@... Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Right on the mark as always Tracie!Blessings,Beckytiodaat@... wrote: In a message dated 6/3/07 11:10:26 PM Pacific Daylight Time, k_yarrow (AT) yahoo (DOT) com writes: symptoms for about 2 years now- started with intense headaches, pressure in my head, dizziness, vomiting- the doctor said sinus infection. I felt a little better eventually but sypmtoms would keep coming back with more intensity. The doctors all said sinuses. One doctor told me to stop eating wheat and dairy because I might have developed an allergy. Another doctor told me I had anxiety because the MRIs didn't show anything. In the meantime, I started losing my vision and would become completely incapacitated several times throughout every day by headaches, dizziness, numbness, disorientation and slurred speech. Finally I saw an opthalmologist who said I had pseudotumor cerebri and sent me straight to my neurologist. That's how I got started on steroids and eventually how my neuro realized there was somthing else going on. Headaches, sinus infections, fibromylagia, dementia , anxiety-- yep, you've got alot of it. Bugger is steroids are just the start-- and I hope are helping you. How long have you been on them? What dose? I do hope that they are looking at steroid sparing meds-- Imuran, Methotrexate, Plaquenil-- so that you don't end up developing the diabetes and the osteoporosis. So many of us were told we were depressed, or were having panic attacks, or general anxiety. Don't we wish. Actually the anxiety and depression come from not knowing what is going on with our bodies-- but we know it's not right. I will say this about depression-- it is a secondary condition many of us need help with. When we have the chronic pain and headaches and sarcoid-induced arthritis- we don't get a normal nights sleep. When you don't get enough sleep, the seratonin and norephinephrine hormones in your brain get screwed up, and this makes you depressed. The pain also requires that these two hormones be in sync-- or you won't be sleeping. This is the pain cycle-- so if you need pain meds-- take them. Don't wait until you are in pain-- you use pain meds to control your pain-- not make it stop- because once you are in a pain cycle, it is very, very hard to break out of it. , I preach hydration, hydration, and hydration. This is because we are all experiencing systemic inflammation, and generally most of us run a low grade fever daily. This has a tendency to keep us dehydrated, and even a tiny bit-- and the joints and ligaments are gonna yell at us. Loudly. The other component that for me was top of the list-- when my blood sugar is even high normal- 110-118- my neuropathy is out of control. So I've had to learn to really watch my diet. The lactic acid in dairy products seems to add insult to injury, so if you've found that you hurt more after a grilled cheese sandwich, skip this choice. The Rice Dream milk substitutes are excellant. Let us know how we can help, and we're glad you found us too! Hugs, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Get your own web address. Have a HUGE year through Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Welcome to the group. Yes, you found a great group who are very supportive and loaded with all kinds of important information. I , too, was initially told I was suffering from anxiety and depression that was causing the health issues I was experiencing. Going through so many doctors, I finally found one who took me seriously and treated me. I am glad that you finally found one that took you seriously too and treated you with respect and the right kinds of medication. A lot of people in this group have gone thru similar situations. Good luck and hope you are feeling better soon, Best wishes, Debbie Co-moderatork_yarrow wrote: Wow, I am so glad to have found this group of people. I am at work right now and there are tears running down my face because I see so many things in these messages that are familiar to me- things that my friends and family just don't understand.I haven't been 100% diagnosed with neurosarcoid, but all signs point that way. I've been having symptoms for about 2 years now- started with intense headaches, pressure in my head, dizziness, vomiting-the doctor said sinus infection. I felt a little better eventually but sypmtoms would keep coming back with more intensity. The doctors all said sinuses. One doctor told me to stop eating wheat and dairy because I might have developed an allergy. Another doctor told me I had anxiety because the MRIs didn't show anything. In the meantime, I started losing my vision and would become completely incapacitated several times throughout every day by headaches, dizziness, numbness, disorientation and slurred speech. Finally I saw an opthalmologist who said I had pseudotumor cerebri and sent me straight to my neurologist. That's how I got started on steroids and eventually how my neuro realized there was somthing else going on. It's been a crazy trip and there's so much more, but I don't want to bombard you all with the long story. I'm just so happy to have found you all!>> Hi , > Well, you've found a family of over 400 people that have or are going thru > the testing you're doing. > We have so much info, and knowledge that we are willing to share, and if we > don't have an answer-- we'll help look for one.> Do you have sarc anywhere other that NS? What treatments have you been on? > What tests are they doing? > Tell us more, and know that you've come to the right place-- we truly hold > hands and hearts with each other-- and the laughter and tears and joys and grief > are shared-- and it's all ok. > > Welcome to the family,> Tracie> NS Co-owner/moderator> > > **************************************> See what's free > at http://www.aol.com.>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 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 June 4, 2007 Report Share Posted June 4, 2007 , I have not been diagnosed 100% either so just keep hanging in there. You will find a lot of support here. Terri G. > > > > Hi , > > Well, you've found a family of over 400 people that have or are > going thru > > the testing you're doing. > > We have so much info, and knowledge that we are willing to share, > and if we > > don't have an answer-- we'll help look for one. > > Do you have sarc anywhere other that NS? What treatments have you > been on? > > What tests are they doing? > > Tell us more, and know that you've come to the right place-- we > truly hold > > hands and hearts with each other-- and the laughter and tears and > joys and grief > > are shared-- and it's all ok. > > > > Welcome to the family, > > Tracie > > NS Co-owner/moderator > > > > > > ************************************** > > See what's free > > at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 It hasn't shown up in my biopsy either. I developed hydrocephaelus in 1997 and had surgery to have a shunt put in. After several years I began to develop bee sting feelings & leg jerks/kicks. My first neurologist said it was from the surgery I was losing "gray matter" and all he did was prescribe meds for symptoms. After a couple of years & no tests except an occasional mri I got fed up & went to another neuro. He's the one who referred me to Dr Baughman & that's my Readers Digest version of my story! grannylunatic@... Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2007 Report Share Posted June 5, 2007 , I also have not officially been diagnosed. My doctors keep blaming all my symptoms on other minor things. They have told me it was my depression and anxiety too and report this to my psychiatrist. Keep it up and hope you have found the right doctor to help you. It sounds like you have. Wishing you well, Debbie CO-moderatormosaicgirl1 wrote: ,I have not been diagnosed 100% either so just keep hanging in there. You will find a lot of support here.Terri G.> >> > Hi ,> > Well, you've found a family of over 400 people that have or are> going thru> > the testing you're doing.> > We have so much info, and knowledge that we are willing to share,> and if we> > don't have an answer-- we'll help look for one.> > Do you have sarc anywhere other that NS? What treatments have you> been on?> > What tests are they doing?> > Tell us more, and know that you've come to the right place-- we> truly hold> > hands and hearts with each other-- and the laughter and tears and> joys and grief> > are shared-- and it's all ok.> >> > Welcome to the family,> > Tracie> > NS Co-owner/moderator> >> >> > **************************************> > See what's free> > at http://www.aol.com.> >>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 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...
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