RE: I can't believe you all exist!

[Guest guest]

Thank you, Rose! No apologies ever needed! I'm just very grateful to have finally met some people who share this rollercoaster ride. I haven't been online in a few days, so I've been trying to catch up on what I've missed. I honestly want to cry - part good cry, part sad cry. I can't believe that all these crazy things going on inside my body are things that you all go through. It's so overwhelming. It kind of feels like being in therapy - it feels good to sort thought it all, but it's awfully gnawing inside having to face it. I'll let you in on a little secret - I'm really scared. What of? I don't know exactly. I guess it's because I could lose my sight, my mind or die... Yeah, that about sums it up. I have felt so helpless and try really hard not to burden my family and friends with complaints that they cannot help me

with, so it's locked inside. And the doctors really don't understand it and I feel like they are just arbitrarily medicating me with no relief. I have read where a lot of us feel like just trying to ignore it. I, too, have tried to just stop the meds and "deal" with it, but within a day or two, I find myself in so much pain and confusion and misery, that it's just not worth giving up on the meds. Lately, when I wake up in the morning? Everything is in different colors - for example, my son's blonde hair looks green or blue, and the white shades on my bedroom windows look orange. That scares the heck out of me! Am I going blind? Agh! And if I am, what will I do without all of you when I can't see my screen anymore? Ugh.. I don't want to over react here... I'm sure it'll be something silly, right? Anyhow, I have an appointment to see my regular physician next week. I hope he takes me more

seriously. If not, I will be getting a new doctor! And I'm going to try to find another neurologist. If I have to travel to timbuktu, well, hopefully there won't be a plane involved, but I'll get out there. Can I ask you a few questions? They've done chest x-rays, but they say my lungs are clear. But I can't breathe well - I'm always short of breath. Could they be missing something? My periods are erratic. My OB doesn't believe in "peri-menopause." He says you're either in menopause or you're not. Sometimes I bleed for weeks, sometimes I don't get a period at all. Is this something that can be related to the NS? Also, I hear a "draining" sound from my head every once in a while - it used to be more frequent after the spinal tap. Both doctors look at me like I need to have my

head examined when I ask them about it, but I'm thinking it might be something we get with NS... Do you have this happen? And the pain... The head pain is excruciating, but I have terrible pain in my arms and legs, too. It has been progressively getting worse. Should I ask about some other type of medication? Is there anything out there that is non-steroidal or that won't promote weight gain? I'm two people in one body! I hate it. There's not a dang thing I can do about it, either. I think Tracie told me that it could be that my pituitary gland is being messed with... yikes! Whatever it is, the doctors aren't taking me seriously and just expect me to "work through the pain" and exercise! Oh my God! They have no idea what they're saying to me! I have a gagillion more questions, but these are the most pressing. Don't feel you have to

rush to respond... Just whenever you have a chance, that'd be great. I really appreciate your thoughts! (Gosh - 'just looked at my email to you - guess I could be called jabberjeannie! LOL!) Hugs, Jeannie Rose wrote: Jeannie, I'm very glad you found us, although I wish we had something else in common. Please forgive me for the long delay in answering your letter, and don't worry about long messages; my nickname is Ramblin' Rose for a reason! You are right about needing a doctor who is knowledgeable, willing to listen & take you seriously, and respects your right to question your treatment options. Your family doc is

behind the times; for the last several years the AMA and other medical groups have encouraged patients to be involved in their own health care decisions. There has been such an explosion in information that no doctor alive can be current on everything. Even most neurologists are ignorant of recent research & treatment options for sarc. I don't know a sarc specialist in Pittsburgh; hopefully another member will have some advice for you. You may have to travel a bit. I'll try to find some info for you. Just know that you are not crazy. Sarc is a sneaky disease & can pop up in unexpected places. You need doctors who recognize this. Again, welcome to the group. Ramblin'

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[Guest guest]

Hi Rose - Sorry, I missed this one, too! They did do some bloodwork and they didn't say there was anything out of the ordinary except that they found the ACE levels in my blood were elevated? This was about six months after the spinal tap, which also showed high ACE levels. I'm going next week to my PCP, so I'll ask him to do those tests again! Thank you! Your feet being in pain like that sounds miserable. You know, you have to wonder, though, if a lot of our pains and weird sensations aren't all sarc related on some level! Our nervous systems are under attack...Nothing amazes me anymore with this. I wish I could take your pain away. I'll say prayers for you, I promise. Miracles happen! More hugs, JeannieRose

wrote: Jeannie, have you been tested for diabetes & hypothyroidism? Those could both cause weight gain. Wouldn't you like to just slap the doctor who tells you to "push through the pain?" This isn't just soreness from being out of shape. My family doctor told me 5 years ago that there wasn't anything wrong with me that an hour on the treadmill every day wouldn't fix! Moron. Unfortunately, most doctors know so little about sarcoidosis that they don't realize that it can affect every organ & system in your body & that you may have a lot of weird symptoms. I used to feel like I had pieces of tape stuck to the bottom of my feet. At first it was just for a few minutes, in different spots. Eventually I had

full-blown neuropathy in both feet, with numbness & severe pain. The tape feeling was the beginning of it. Now I also know that every weird or painful sensation I have is not necessarily sarc-related, but they should all be taken seriously & investigated. Good luck with finding a caring, knowledgeable doctor. Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I can't believe you all exist!Date: Tue, 28 Mar 2006 07:50:04 -0800 (PST) Thank you, Tracie - very, VERY much! I will check out everything tonight when I have more time to myself! I was shocked to see that Terri G. has that fluid sound in her head... I GET THAT TOO!!! Everyone makes fun of me about it ("Nah, Jeannie doesn't have a screw loose - she's just got a slow leak in her head!) because nobody has ever experienced it! And my doctors look at me as if I've got two heads when I tell them about it!!! I thought I was going crazy! At first I thought maybe it was something that happens to everyone who has a spinal tap, but my neurologist ignored me completely when I told him about it. It sounds like fluid is draining from my head and down

the back of my neck! It's the most bizarre experience... What IS that? Does everyone get that? Is it something I should be concerned about? And I get that incredibly painful headache, too. It feels like I've got a steel girder shot up from the base of my head right through the top. I can't hardly move and it feels like lightning. Do you see lightning when there are loud noises? Do you all have trouble swallowing sometimes, too, ESPECIALLY when you get those headaches? Uck! And do you get those staring spells, too? Sometimes for no reason, it feels like my eyes lock onto something and I can't move until they're done. I'm perfectly aware of what is going on around me, but it's like I'm in a trance or something, it doesn't hurt, it's peaceful almost, and it only lasts for a few seconds... Weird! Neurontin did nothing for me, so right now they only have me on

Amitryptalin (can't remember the name brand) for pain and to help me sleep at night. It is an anti-depressant, I believe. And they have me on Topomax for the high blood pressure. They were going to put me on steroids (prednisone) but I told them I didn't want them yet - I'm already unbelievably over weight, for one; and for two, my body felt like it had gone through the wash cycle with all the med changes they made over the past year... I wanted to take a break from "just trying" stuff. I felt very unhealthy. (I know, like I'm healthy to begin with! LOL!!) I'm supposed to see my family physician next week and then he is going to prescribe something new. Going without anything hasn't been fun at all. I've been really pushing myself to do ANYTHING because I'm so exhausted all the time and I hurt really bad. In all honestly, I think they (the doctors) think I'm nuts. As far as treatment, they don't really do much more than medicate me. The neurologist does a routine physical - watching me walk, asking me to touch my chin to my chest - stuff like that. I have an MRI once every 6 months to see if I have any more lesions. And the neurologist wants to do another spinal to see how my ACE levels are (found in my spinal fluid - not in my blood - at least they didn't say it was in my blood), but I hesitate to let him touch me again. They had also sent me for nerve conduction tests in my wrists and arms, but all that showed is that I have carpal tunnel syndrome. And they had me go for that brainwave test - I can't remember what it's called - but it showed I have optic neuritis. When I became concerned about the weight gain (about half of the gain ago), the neurologist said I should try walking and get a little exercise. I do walk in the warmer weather,

but man-oh-man it hurts so bad after I do. He said to "just push through the pain." I wanted to cry. He doesn't know what this feels like, obviously. Anyhow, that's all they do so far. I think when I go back, my PCP is going to flip because I've gained more weight, but I'm not doing this on purpose! I eat three small squares a day and I walk and I work... And I'm getting huge. I can't stand it. Is this normal, too? I attributed it to all the different meds they kept putting me on and taking me off. At first. But now I'm just on the two scripts and I'm still getting bigger. Unreal! Thanks again, Tracie! I'm really looking forward to getting to know you all! Jeannie tiodaat@... wrote: Hi Jeannie,Welcome to the "family"! So very, very sorry you had to find us.When this group started just 4 yrs ago or so-- we were 50 or 70 people, now we're real close to 400!You aren't alone anymore!We all yell, scream, rant rave, laugh and cry with each other. We share what works, what doesn't and what we've learned along the way. In our ARCHIVES, and our LINKS--the addresses should be at the bottom of this and every email that goes out-- there is a wealth of info.Treatment options, medications, sites that help, is all there. Feel free to print it out and take it with you to the MD's.

What meds are you on? What is your PCP doing to treat you? Let us know what you need-- and I'll tell Rose to get it done. (I'm head nacho this week!) Again, welcome--With compassion,TracieNS Co-owner/moderator New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

[Guest guest]

Hi Rose - Sorry, I missed this one, too! They did do some bloodwork and they didn't say there was anything out of the ordinary except that they found the ACE levels in my blood were elevated? This was about six months after the spinal tap, which also showed high ACE levels. I'm going next week to my PCP, so I'll ask him to do those tests again! Thank you! Your feet being in pain like that sounds miserable. You know, you have to wonder, though, if a lot of our pains and weird sensations aren't all sarc related on some level! Our nervous systems are under attack...Nothing amazes me anymore with this. I wish I could take your pain away. I'll say prayers for you, I promise. Miracles happen! More hugs, JeannieRose

wrote: Jeannie, have you been tested for diabetes & hypothyroidism? Those could both cause weight gain. Wouldn't you like to just slap the doctor who tells you to "push through the pain?" This isn't just soreness from being out of shape. My family doctor told me 5 years ago that there wasn't anything wrong with me that an hour on the treadmill every day wouldn't fix! Moron. Unfortunately, most doctors know so little about sarcoidosis that they don't realize that it can affect every organ & system in your body & that you may have a lot of weird symptoms. I used to feel like I had pieces of tape stuck to the bottom of my feet. At first it was just for a few minutes, in different spots. Eventually I had

full-blown neuropathy in both feet, with numbness & severe pain. The tape feeling was the beginning of it. Now I also know that every weird or painful sensation I have is not necessarily sarc-related, but they should all be taken seriously & investigated. Good luck with finding a caring, knowledgeable doctor. Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I can't believe you all exist!Date: Tue, 28 Mar 2006 07:50:04 -0800 (PST) Thank you, Tracie - very, VERY much! I will check out everything tonight when I have more time to myself! I was shocked to see that Terri G. has that fluid sound in her head... I GET THAT TOO!!! Everyone makes fun of me about it ("Nah, Jeannie doesn't have a screw loose - she's just got a slow leak in her head!) because nobody has ever experienced it! And my doctors look at me as if I've got two heads when I tell them about it!!! I thought I was going crazy! At first I thought maybe it was something that happens to everyone who has a spinal tap, but my neurologist ignored me completely when I told him about it. It sounds like fluid is draining from my head and down

the back of my neck! It's the most bizarre experience... What IS that? Does everyone get that? Is it something I should be concerned about? And I get that incredibly painful headache, too. It feels like I've got a steel girder shot up from the base of my head right through the top. I can't hardly move and it feels like lightning. Do you see lightning when there are loud noises? Do you all have trouble swallowing sometimes, too, ESPECIALLY when you get those headaches? Uck! And do you get those staring spells, too? Sometimes for no reason, it feels like my eyes lock onto something and I can't move until they're done. I'm perfectly aware of what is going on around me, but it's like I'm in a trance or something, it doesn't hurt, it's peaceful almost, and it only lasts for a few seconds... Weird! Neurontin did nothing for me, so right now they only have me on

Amitryptalin (can't remember the name brand) for pain and to help me sleep at night. It is an anti-depressant, I believe. And they have me on Topomax for the high blood pressure. They were going to put me on steroids (prednisone) but I told them I didn't want them yet - I'm already unbelievably over weight, for one; and for two, my body felt like it had gone through the wash cycle with all the med changes they made over the past year... I wanted to take a break from "just trying" stuff. I felt very unhealthy. (I know, like I'm healthy to begin with! LOL!!) I'm supposed to see my family physician next week and then he is going to prescribe something new. Going without anything hasn't been fun at all. I've been really pushing myself to do ANYTHING because I'm so exhausted all the time and I hurt really bad. In all honestly, I think they (the doctors) think I'm nuts. As far as treatment, they don't really do much more than medicate me. The neurologist does a routine physical - watching me walk, asking me to touch my chin to my chest - stuff like that. I have an MRI once every 6 months to see if I have any more lesions. And the neurologist wants to do another spinal to see how my ACE levels are (found in my spinal fluid - not in my blood - at least they didn't say it was in my blood), but I hesitate to let him touch me again. They had also sent me for nerve conduction tests in my wrists and arms, but all that showed is that I have carpal tunnel syndrome. And they had me go for that brainwave test - I can't remember what it's called - but it showed I have optic neuritis. When I became concerned about the weight gain (about half of the gain ago), the neurologist said I should try walking and get a little exercise. I do walk in the warmer weather,

but man-oh-man it hurts so bad after I do. He said to "just push through the pain." I wanted to cry. He doesn't know what this feels like, obviously. Anyhow, that's all they do so far. I think when I go back, my PCP is going to flip because I've gained more weight, but I'm not doing this on purpose! I eat three small squares a day and I walk and I work... And I'm getting huge. I can't stand it. Is this normal, too? I attributed it to all the different meds they kept putting me on and taking me off. At first. But now I'm just on the two scripts and I'm still getting bigger. Unreal! Thanks again, Tracie! I'm really looking forward to getting to know you all! Jeannie tiodaat@... wrote: Hi Jeannie,Welcome to the "family"! So very, very sorry you had to find us.When this group started just 4 yrs ago or so-- we were 50 or 70 people, now we're real close to 400!You aren't alone anymore!We all yell, scream, rant rave, laugh and cry with each other. We share what works, what doesn't and what we've learned along the way. In our ARCHIVES, and our LINKS--the addresses should be at the bottom of this and every email that goes out-- there is a wealth of info.Treatment options, medications, sites that help, is all there. Feel free to print it out and take it with you to the MD's.

What meds are you on? What is your PCP doing to treat you? Let us know what you need-- and I'll tell Rose to get it done. (I'm head nacho this week!) Again, welcome--With compassion,TracieNS Co-owner/moderator New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

[Guest guest]

Hi Rose - Sorry, I missed this one, too! They did do some bloodwork and they didn't say there was anything out of the ordinary except that they found the ACE levels in my blood were elevated? This was about six months after the spinal tap, which also showed high ACE levels. I'm going next week to my PCP, so I'll ask him to do those tests again! Thank you! Your feet being in pain like that sounds miserable. You know, you have to wonder, though, if a lot of our pains and weird sensations aren't all sarc related on some level! Our nervous systems are under attack...Nothing amazes me anymore with this. I wish I could take your pain away. I'll say prayers for you, I promise. Miracles happen! More hugs, JeannieRose

wrote: Jeannie, have you been tested for diabetes & hypothyroidism? Those could both cause weight gain. Wouldn't you like to just slap the doctor who tells you to "push through the pain?" This isn't just soreness from being out of shape. My family doctor told me 5 years ago that there wasn't anything wrong with me that an hour on the treadmill every day wouldn't fix! Moron. Unfortunately, most doctors know so little about sarcoidosis that they don't realize that it can affect every organ & system in your body & that you may have a lot of weird symptoms. I used to feel like I had pieces of tape stuck to the bottom of my feet. At first it was just for a few minutes, in different spots. Eventually I had

full-blown neuropathy in both feet, with numbness & severe pain. The tape feeling was the beginning of it. Now I also know that every weird or painful sensation I have is not necessarily sarc-related, but they should all be taken seriously & investigated. Good luck with finding a caring, knowledgeable doctor. Ramblin' Rose Moderator Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I can't believe you all exist!Date: Tue, 28 Mar 2006 07:50:04 -0800 (PST) Thank you, Tracie - very, VERY much! I will check out everything tonight when I have more time to myself! I was shocked to see that Terri G. has that fluid sound in her head... I GET THAT TOO!!! Everyone makes fun of me about it ("Nah, Jeannie doesn't have a screw loose - she's just got a slow leak in her head!) because nobody has ever experienced it! And my doctors look at me as if I've got two heads when I tell them about it!!! I thought I was going crazy! At first I thought maybe it was something that happens to everyone who has a spinal tap, but my neurologist ignored me completely when I told him about it. It sounds like fluid is draining from my head and down

the back of my neck! It's the most bizarre experience... What IS that? Does everyone get that? Is it something I should be concerned about? And I get that incredibly painful headache, too. It feels like I've got a steel girder shot up from the base of my head right through the top. I can't hardly move and it feels like lightning. Do you see lightning when there are loud noises? Do you all have trouble swallowing sometimes, too, ESPECIALLY when you get those headaches? Uck! And do you get those staring spells, too? Sometimes for no reason, it feels like my eyes lock onto something and I can't move until they're done. I'm perfectly aware of what is going on around me, but it's like I'm in a trance or something, it doesn't hurt, it's peaceful almost, and it only lasts for a few seconds... Weird! Neurontin did nothing for me, so right now they only have me on

Amitryptalin (can't remember the name brand) for pain and to help me sleep at night. It is an anti-depressant, I believe. And they have me on Topomax for the high blood pressure. They were going to put me on steroids (prednisone) but I told them I didn't want them yet - I'm already unbelievably over weight, for one; and for two, my body felt like it had gone through the wash cycle with all the med changes they made over the past year... I wanted to take a break from "just trying" stuff. I felt very unhealthy. (I know, like I'm healthy to begin with! LOL!!) I'm supposed to see my family physician next week and then he is going to prescribe something new. Going without anything hasn't been fun at all. I've been really pushing myself to do ANYTHING because I'm so exhausted all the time and I hurt really bad. In all honestly, I think they (the doctors) think I'm nuts. As far as treatment, they don't really do much more than medicate me. The neurologist does a routine physical - watching me walk, asking me to touch my chin to my chest - stuff like that. I have an MRI once every 6 months to see if I have any more lesions. And the neurologist wants to do another spinal to see how my ACE levels are (found in my spinal fluid - not in my blood - at least they didn't say it was in my blood), but I hesitate to let him touch me again. They had also sent me for nerve conduction tests in my wrists and arms, but all that showed is that I have carpal tunnel syndrome. And they had me go for that brainwave test - I can't remember what it's called - but it showed I have optic neuritis. When I became concerned about the weight gain (about half of the gain ago), the neurologist said I should try walking and get a little exercise. I do walk in the warmer weather,

but man-oh-man it hurts so bad after I do. He said to "just push through the pain." I wanted to cry. He doesn't know what this feels like, obviously. Anyhow, that's all they do so far. I think when I go back, my PCP is going to flip because I've gained more weight, but I'm not doing this on purpose! I eat three small squares a day and I walk and I work... And I'm getting huge. I can't stand it. Is this normal, too? I attributed it to all the different meds they kept putting me on and taking me off. At first. But now I'm just on the two scripts and I'm still getting bigger. Unreal! Thanks again, Tracie! I'm really looking forward to getting to know you all! Jeannie tiodaat@... wrote: Hi Jeannie,Welcome to the "family"! So very, very sorry you had to find us.When this group started just 4 yrs ago or so-- we were 50 or 70 people, now we're real close to 400!You aren't alone anymore!We all yell, scream, rant rave, laugh and cry with each other. We share what works, what doesn't and what we've learned along the way. In our ARCHIVES, and our LINKS--the addresses should be at the bottom of this and every email that goes out-- there is a wealth of info.Treatment options, medications, sites that help, is all there. Feel free to print it out and take it with you to the MD's.

What meds are you on? What is your PCP doing to treat you? Let us know what you need-- and I'll tell Rose to get it done. (I'm head nacho this week!) Again, welcome--With compassion,TracieNS Co-owner/moderator New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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

[Guest guest]

Hi Tracie - These two emails you sent came in empty... Did I do or say something wrong??? I'm sorry if I did! Jeannie tiodaat@... wrote:

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi Tracie - These two emails you sent came in empty... Did I do or say something wrong??? I'm sorry if I did! Jeannie tiodaat@... wrote:

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi Tracie - These two emails you sent came in empty... Did I do or say something wrong??? I'm sorry if I did! Jeannie tiodaat@... wrote:

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi - How are you doing today??? I've had you on my mind and in my prayers! Is Dr. Baughman out of s Hopkins? My Mom doesn't live too far from there... If I can get an appointment there, I know she'd love to go with me. Please let me know. Hugs, Jeannie Solberg wrote: Hi Jeannie, My name is , I live in Wisconsin and I have also homeschooled my sons (til they went to high-school). The sarc had just gotten so bad that I just couldn't do it any more. I was in too much pain and couldn't take the kids out to anything social any more. btw... Doctors are something...aren't they?....

They take things very personally even though they'd like to pretend they don't. Some docs don't want to treat you out of fear and send you to specialists and some docs think they know more than they do and try to treat what they know nothing about. I've had both. Right now I know I need to have more up-dating like tests done and I'm just so tired of it that i've been putting it off. Actually I'm waiting for the weather, and thus my mood, to improve. I have to keep lists of stuff all over the house cuz my memory is so bad and I still goof up. The pain and the memory loss are really hard to accept. And the loss of family fun time. I'll write more later...I need to lay down for abit. It rained last night and my head is all foggy-ish today. Yeah, don't grade me on my grammer or spelling anymore and I like to make up words. etc. Believe it or not I couldn't remember how to spell 'make' this morning.

geeze! If you could make the trip to see Dr. Baughman it would probably the best advice I could share. gotta go.....hugs S. gabbysauntienini wrote: Hi everyone!My name is Jeannie. I live in western Pennsylvania. I am 40 years young. I am a wife, a homeschooling Mom, a "basket lady" with a sales branch of my very own, and I am heavily involved in a charitable foundation that friends and I just established which benefits breast cancer patients in our county (I'm President, but will be stepping down this year). I was diagnosed with neurosarcoidosis almost two years ago so I don't teach Sunday school or co-chair a friend's Juvenile Diabetes Walk team anymore - hey, a girl in my condition has to cut back somewhere!

LOL!!! Yeah, I'm nuts. I like to keep busy... And aside from from this lovely disease I share with you, I feel pretty young at heart and am determined that I am not going to take this lying down. No way. Not me. Uh uh. I have had to "give up" so many things already -I am not going to give up and lose myself completely to this disease. So, in a way, I kind of create my own trouble with pain, but it's a "good" pain! LOL!This is one heck of an experience, isn't it? My doctors, although I'm certain well-meaning gentlemen, honestly don't help me one bit. I feel like they don't listen, or they don't believe me or something. My husband has even gone with me to my appointments to share his concerns about and experiences with the changes in me, but the doctors seem to just stare at me, smile and nod, write a new "script du jour" for me to whirl

with, and then gleefully turn me out on my merry little way. They might as well pat me on the head and give me a lollipop, too! LOL!! But honestly, I just can't handle it anymore. I've been on ups and downs emotionally and physically for the past two years as they've tried to figure out what medicines will help me. I've had some bad reactions to different medications, so it's been a difficult journey. I am in pain most of the time all over my body, but mostly in my arms and my head. I have a lesion vicariously placed at the base of my brain stem/top of the spinal chord, so I guess some head pain is to be expected. While I was reading through some of your messages, I just cried. Somebody understands! Somebody else is going through this! I can't believe it! I read the symptoms you are all going through, and I, too, have them. Eureka! I'm not alone and

I'm not crazy!!! I read about your medications and some are familiar, some are not. You all are so witty and supportive and fine with listening to each other... What a wonderful, wonderful thing. I can't really tell anyone about this because they just don't understand, and I sure don't want to burden them with worries about me. They either treat me like an invalid or they treat me like I'm nuts. I know it must be hard for everyone to understand, but anyone who knows me, knows this is not like me, and it's unnerving to ALL of us. So they tell me to "take it easy" and "say 'no' a little more often." Yeah, right, until I have to tell THEM "no." Then it's a whole different ball of wax! Who can win?I digress... I'm sorry. I tend to do that. I have a wonderful WONDERFUL husband and a 9 year old son who are really great about the days that I'm just not

up to par. The sad thing is that I feel so isolated in this... They go do all this fun stuff and it kills me that I can't join them.. if I do, I pay dearly. And I've been getting worse, which is an absolute bummer. I'm having those delightful steaming hot flashes (not steam-y - steam-ing... I steamed an entire house full of windows one time it was so bad! LOL!!!), the dizziness, the pain, the weight gain (My word! In one year I've gained a whole other person! The last time they took my blood pressure - they brought in the "obese" cuff!! HEARTBREAK!!!), optic neuropathy(?) - I always get the term wrong, high high blood pressure, forgetfulness - sometimes whole chunks of memory loss...ucky uck uck. I'm sure I could go on and on, but I can see from your emails that you all know how it is. (Do any of you lie down at night in the hope of sleeping and then feel an icy high pitched

screeching kind of pain suddenly turn on? Yeah... that kind of makes it impossible to sleep, too, which is why I keep busy with so many activities - I need something to do while I'm awake!) I'm so tired. Of everything. I need to get to a good doctor. One who is experienced with neurosarcoidosis. My neurologist was apparently one of the forerunning "students" of neurosarcoidosis, but he isn't helping me at all. It's too long to get into, but he is fighting cancer himself, and he doesn't have many good days, I guess. Aside from not listening or explaining, or from what seems like arbitrarily changing my meds each time I see him, the worst thing he did was a spinal tap on me right in his office with no one else in the room and he forgot to tell me to drink plenty of fluids afterward so I got dehydrated and got that horrifying spinal headache that was cured only by the

ever-so-popular and oh-my-goodness-how-archaic epidural blood patch. Yeah. It wasn't good. I felt like I was being tortured during the Spanish inquisition. So pretty.I discussed my concerns with my family physician who said that he personally feels quite confident that he himself can handle my neurosarcoidosis because he has another patient who has the disease. Further, he went on to say that he is quite confident in my neurologists capability to manage my case. I told him, most kindly and most respectfully, that I am not comfortable with either scenario. He snapped that HE WAS and then we had what seemed like an eternity of a staring contest. I was utterly in shock. (I swear the tension was just like being in the middle of a Clint Eastwood film just before the big showdown - you know, where the hands are quivering over the gun in the holster?) I went numb. Finally I asked him

to recommend another neurologist for a second opinion and he quickly named someone but he didn't write it down and he was most obviously agitated with me for not trusting his judgment. I HATE to sound pessimistic, but I need a moment to vent: This man has been my family physician for over 10 years, and he has missed all of the signs. ALL of the signs. He's human, not a medical god, I realize, but geez... if he has missed the signs all this time, then how am I to trust that in his vast experience with his one other patient that he can help me??? UGH! So, I feel like I am miserably entangled in a net and can't help myself. What do I do??? Nobody else I know has this. Until all of you, I had no way to measure whether what is happening is serious, or to be expected or manageable or anything. I have been so alone. I can't thank you enough for being here. I

hope you don't mind me being here and I certainly don't want to intrude. But it sure would be nice to have some friends who are in the same place I am. I need your help. I think the first most important thing to do is to find a good doctor. Can anyone recommend a neurologist in the Pittsburgh area who might be able to help me? Or can anyone recommend how I can find a suitable neurologist? Anything that you have to say will be SO greatly appreciated. And I'll try not to write a book every time I pop in, ok? Please just know as you read my emails I am a very tongue-in-cheek kind of person. I just have to find the humor in things, because I don't like to cry!Thank you & God bless us - every one!Jeannie New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low rates.

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Jeanne Ive only just read your message so I dont know what responses youve already had but I think it is really important for you to see an opthamologist ASAP as I have had sarcoid on both my optic nerves and the on of the first signs of my sight failing is colour blindness - I have lost the sight in one eye because of failure to get treated straight away and nearly lost the sight in the other a couple of times once it took a few months to get back after one severe attack. IV steroids has usually worked pretty quickly for me. Please get seen straight away ClairJeanne Betters wrote: Thank you, Rose! No apologies ever needed! I'm just very grateful to have finally met some people who share this rollercoaster ride.

I haven't been online in a few days, so I've been trying to catch up on what I've missed. I honestly want to cry - part good cry, part sad cry. I can't believe that all these crazy things going on inside my body are things that you all go through. It's so overwhelming. It kind of feels like being in therapy - it feels good to sort thought it all, but it's awfully gnawing inside having to face it. I'll let you in on a little secret - I'm really scared. What of? I don't know exactly. I guess it's because I could lose my sight, my mind or die... Yeah, that about sums it up. I have felt so helpless and try really hard not to burden my family and friends with complaints that they cannot help me with, so it's locked inside. And the doctors really don't understand it and I feel like they are just arbitrarily medicating me with no relief. I have read where a lot of us

feel like just trying to ignore it. I, too, have tried to just stop the meds and "deal" with it, but within a day or two, I find myself in so much pain and confusion and misery, that it's just not worth giving up on the meds. Lately, when I wake up in the morning? Everything is in different colors - for example, my son's blonde hair looks green or blue, and the white shades on my bedroom windows look orange. That scares the heck out of me! Am I going blind? Agh! And if I am, what will I do without all of you when I can't see my screen anymore? Ugh.. I don't want to over react here... I'm sure it'll be something silly, right? Anyhow, I have an appointment to see my regular physician next week. I hope he takes me more seriously. If not, I will be getting a new doctor! And I'm going to try to find another neurologist. If I have to travel to timbuktu, well, hopefully there won't be

a plane involved, but I'll get out there. Can I ask you a few questions? They've done chest x-rays, but they say my lungs are clear. But I can't breathe well - I'm always short of breath. Could they be missing something? My periods are erratic. My OB doesn't believe in "peri-menopause." He says you're either in menopause or you're not. Sometimes I bleed for weeks, sometimes I don't get a period at all. Is this something that can be related to the NS? Also, I hear a "draining" sound from my head every once in a while - it used to be more frequent after the spinal tap. Both doctors look at me like I need to have my head examined when I ask them about it, but I'm thinking it might be something we get with NS... Do you have this happen? And the pain... The head pain is

excruciating, but I have terrible pain in my arms and legs, too. It has been progressively getting worse. Should I ask about some other type of medication? Is there anything out there that is non-steroidal or that won't promote weight gain? I'm two people in one body! I hate it. There's not a dang thing I can do about it, either. I think Tracie told me that it could be that my pituitary gland is being messed with... yikes! Whatever it is, the doctors aren't taking me seriously and just expect me to "work through the pain" and exercise! Oh my God! They have no idea what they're saying to me! I have a gagillion more questions, but these are the most pressing. Don't feel you have to rush to respond... Just whenever you have a chance, that'd be great. I really appreciate your thoughts! (Gosh - 'just looked at my email to you - guess I

could be called jabberjeannie! LOL!) Hugs, Jeannie Rose wrote: Jeannie, I'm very glad you found us, although I wish we had something else in common. Please forgive me for the long delay in answering your letter, and don't worry about long messages; my nickname is Ramblin' Rose for a reason! You are right about needing a doctor who is knowledgeable, willing to listen & take you seriously, and respects your right to question your treatment options. Your family doc is behind the times; for the last several years the AMA and other medical groups have encouraged patients to be involved in their own health care decisions. There has been such an explosion

in information that no doctor alive can be current on everything. Even most neurologists are ignorant of recent research & treatment options for sarc. I don't know a sarc specialist in Pittsburgh; hopefully another member will have some advice for you. You may have to travel a bit. I'll try to find some info for you. Just know that you are not crazy. Sarc is a sneaky disease & can pop up in unexpected places. You need doctors who recognize this. Again, welcome to the group. Ramblin' Rose Moderator Get MSN Messenger with FREE Video Conversation - the next best thing to being there! Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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