Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Bonnie, s Hopkins has a good reputation for sarc treatment, so I'd say it's worth the trip. You are fortunate to have a neurologist who knows his limits & is willing to admit it. As for is it better to have neurosarc than MS, I guess it depends on which type of MS you have. At least with MS, everybody knows what it is, there is a large body of research about it & treatment options. I feel that MS is more predictable than NS. BTW, excellent rant for a rookie! Nice use of caps throughout the routine, with frustration & anger well-expressed. Rant Score: 6.0 for content. 6.0 for presentation. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: doctors visit-resultsDate: Mon, 27 Mar 2006 00:36:13 -0000Hi-I went for my results from all my tests and everything came back ok except for my ACE level was elevated in my spinal fluid. Not alot but out of the normal range. My neuro said he does not know what I have but also said that he has little experience with neurosarc. It's NOT ms!! I believe that's a good thing but is it?? So, now he wants to do an mri of my spine. He recommending that I go to ns Hopkins, 3 hrs away. Im not keen on the whole deal. What if I go there and still dont get any answers?? Can a elevated ace level in spinal fluid be neuro sarc?? I have been diagnosed with sarc, without biopsy since 2000. I had it in my medialstinal lymph nodes, left eye and have had joint and muscle pain. The numbness in my hands ,feet and legs started this summer. I also have double vision, vertigo and fatigue. Sound familiar?? The way he told me what my results were was interesting and actually, kind of nice in a way. He said that, since he graduated med school, lyme disease and hiv were discovered. He said that they still don't know alot about so much of the body and although he's not saying I have some rare illness, he's just not sure of what it is. I felt at least that someone GOT IT!! Listened to me and understood how unsettling it is to not know what is wrong, just that SOMETHING is. Validating in a way that my soon to be ex never got.I'm not crazy just cause I have something wrong with me that can't be put in some cute everyday diagnosis and fit there. I sure as he** don't want, need or deserve this crap but I refuse to feel less-than because I have it. The doctors I work for treat me like I'm someone special becuase they KNOW how hard some days are for me and I still show up and work my tail off. Sorry about the rant, I was overdue!LOL!! Bonnie B~~~~ *** ~~~ *** ~~~ *** ~~~~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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Bonnie, I too have gone through a lot of stuff like you. My blood Ace level was elevated but no the spinal. I had oligliclonal bands in the spinal fluid the first time but the past two are negative. I have to enlarged hilar nodes in the lungs but I have to go every 6 months for CT scans. I have been to s Hopkins (great place) and Duke (another great place). I would go if your doctor suggests but just realize they may not have the answer either. I thought these places would be the end all be all of diagnoses. Dr. at 's Hopkins said no MS probably NS. Suggested some tests and was sent home. The docs here didn't do all the testing (some were too risky). Everything is off but not enough to really say one was or the other. Then I went to Duke and they said something was wrong but they didn't know what it is. All I can say is just keep going and doing what your doctors say, but just keep in mind you may not get a definite diagnosis in the end. Take care and I will keep you in my prayers. Terri G. > > Hi-I went for my results from all my tests and everything came back > ok except for my ACE level was elevated in my spinal fluid. Not alot > but out of the normal range. My neuro said he does not know what I > have but also said that he has little experience with neurosarc. It's > NOT ms!! I believe that's a good thing but is it?? So, now he wants > to do an mri of my spine. He recommending that I go to ns > Hopkins, 3 hrs away. Im not keen on the whole deal. What if I go > there and still dont get any answers?? > Can a elevated ace level in spinal fluid be neuro sarc?? I have > been diagnosed with sarc, without biopsy since 2000. I had it in my > medialstinal lymph nodes, left eye and have had joint and muscle > pain. The numbness in my hands ,feet and legs started this summer. I > also have double vision, vertigo and fatigue. Sound familiar?? > The way he told me what my results were was interesting and > actually, kind of nice in a way. He said that, since he graduated med > school, lyme disease and hiv were discovered. He said that they still > don't know alot about so much of the body and although he's not > saying I have some rare illness, he's just not sure of what it is. I > felt at least that someone GOT IT!! Listened to me and understood > how unsettling it is to not know what is wrong, just that SOMETHING > is. Validating in a way that my soon to be ex never got.I'm not crazy > just cause I have something wrong with me that can't be put in some > cute everyday diagnosis and fit there. I sure as he** don't want, > need or deserve this crap but I refuse to feel less-than because I > have it. The doctors I work for treat me like I'm someone special > becuase they KNOW how hard some days are for me and I still show up > and work my tail off. > Sorry about the rant, I was overdue!LOL!! > > Bonnie B > Quote Link to comment Share on other sites More sharing options...
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