Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 Maybe there's hope for me, then! I'm not the hugest sugar eater, but starrrrrchhh...ohhh, yum!! I'd love it if I loved it less!!! alyssa>>>> come to think of it.....I was a large pasta eater too pre opt.....now I dont really care for it. Ill eat it but not like before. What I do like is fettuccine with alfredo sauce with large shrimp and parmasan cheese! Now that is one good FAT dish LOL Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 Maybe there's hope for me, then! I'm not the hugest sugar eater, but starrrrrchhh...ohhh, yum!! I'd love it if I loved it less!!! alyssa>>>> come to think of it.....I was a large pasta eater too pre opt.....now I dont really care for it. Ill eat it but not like before. What I do like is fettuccine with alfredo sauce with large shrimp and parmasan cheese! Now that is one good FAT dish LOL Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 Hi Kendall, It is not at all unusual for NS to cause strokes. We can develop vasculitis in our brains, the swelling of the blood vessels can constrict to a point of blood clots. It is also possible that the vasculitis can mimic stroke like symptoms-- such as slurred speech, paralysis, etc. it does so by putting pressure on the nerves that control whatever area is being compromised. For several of us, we've been able to get treatment that has brought the systemic inflammation down, and we've gotten back some of what we'd lost. Generally, it takes a combination of meds to get this under control-- and once it's become systemic or neurological-- it's time to put the prednisone away and get out the Methotrexate, Imuran, Plaquenil, Enbrel or Remicade. The main issue is to get the inflammation down, and to get the immune system to stop attacking itself. Let us know how we can help, introduce your mom to this site, and we can guide both of you to articles and information that can help her to better communicate with her MD's. Sincerely, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 Hi Kendall, It is not at all unusual for NS to cause strokes. We can develop vasculitis in our brains, the swelling of the blood vessels can constrict to a point of blood clots. It is also possible that the vasculitis can mimic stroke like symptoms-- such as slurred speech, paralysis, etc. it does so by putting pressure on the nerves that control whatever area is being compromised. For several of us, we've been able to get treatment that has brought the systemic inflammation down, and we've gotten back some of what we'd lost. Generally, it takes a combination of meds to get this under control-- and once it's become systemic or neurological-- it's time to put the prednisone away and get out the Methotrexate, Imuran, Plaquenil, Enbrel or Remicade. The main issue is to get the inflammation down, and to get the immune system to stop attacking itself. Let us know how we can help, introduce your mom to this site, and we can guide both of you to articles and information that can help her to better communicate with her MD's. Sincerely, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Hey guys, I have just been trying to catch up on the posts; I have not checked in a week or so? Rose, I am sorry you have pneumonia. I hope you are better soon. Ron, I am glad to see you are posting more often. Have you had any RMO's lately? And to everyone else I did not mention by name, I wish you the best health, the best doctors and the best holidays possible. Take care and I will check in again soon. Teri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Hey guys, I have just been trying to catch up on the posts; I have not checked in a week or so? Rose, I am sorry you have pneumonia. I hope you are better soon. Ron, I am glad to see you are posting more often. Have you had any RMO's lately? And to everyone else I did not mention by name, I wish you the best health, the best doctors and the best holidays possible. Take care and I will check in again soon. Teri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Hello Terri, My friend, it is nice to hear from you and see you post as well. How have you been? I hope you are better and healthier. What's RMO? Regards, Ron >> > Hey guys,> > I have just been trying to catch up on the posts; I have not checked in> a week or so? Rose, I am sorry you have pneumonia. I hope you are> better soon. Ron, I am glad to see you are posting more often. Have you> had any RMO's lately? And to everyone else I did not mention by name, I> wish you the best health, the best doctors and the best holidays> possible.> > Take care and I will check in again soon.> > Teri G.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Hello Terri, My friend, it is nice to hear from you and see you post as well. How have you been? I hope you are better and healthier. What's RMO? Regards, Ron >> > Hey guys,> > I have just been trying to catch up on the posts; I have not checked in> a week or so? Rose, I am sorry you have pneumonia. I hope you are> better soon. Ron, I am glad to see you are posting more often. Have you> had any RMO's lately? And to everyone else I did not mention by name, I> wish you the best health, the best doctors and the best holidays> possible.> > Take care and I will check in again soon.> > Teri G.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Terri G Hey Lady! I've missed your emoticons & your humor. Get as well as they can make you & check in when you feel up to it/in the mood. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Terri G Hey Lady! I've missed your emoticons & your humor. Get as well as they can make you & check in when you feel up to it/in the mood. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 I just have not felt like my perky self lately so it was bestjust to not post. Terri, It is when we aren't our "perky" self, that we need most ot post. It's ok to reach out when we are feeling vulnerable. It's ok to say-- "guys, I need some support here." I know that it's scary when we don't have a firm diagnosis-- but sick is sick-- and that is what we have in common. You don't always have to lift others up-- heck. we support the "unperky" also! Hugs, Tracie PS. I pray that you will get that dx next week, and know how to proceed from there. Have they done a spinal tap to see if you have the protein bands that show up with MS??The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 I just have not felt like my perky self lately so it was bestjust to not post. Terri, It is when we aren't our "perky" self, that we need most ot post. It's ok to reach out when we are feeling vulnerable. It's ok to say-- "guys, I need some support here." I know that it's scary when we don't have a firm diagnosis-- but sick is sick-- and that is what we have in common. You don't always have to lift others up-- heck. we support the "unperky" also! Hugs, Tracie PS. I pray that you will get that dx next week, and know how to proceed from there. Have they done a spinal tap to see if you have the protein bands that show up with MS??The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 , Thanks....I just have not felt like my perky self lately so it was best just to not post. I am expectantly praying for a firm diagnosis on Wednesday with treatment. If not that at least some testing of any kind to figure out once and for all if this is truly NS (or MS) and find something to help me. See, I start running on and on about it ...take care and I will let you know what happens. Terri G. > > Terri G > Hey Lady! I've missed your emoticons & your humor. Get as well as they can make you & check in when you feel up to it/in the mood. > > > > Join our Sock Challenge for Orphans in Kazakhstan > http://groups. yahoo.com/ group/Mittens_ for_Akkol/ > > > grannylunatic@... > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 , Thanks....I just have not felt like my perky self lately so it was best just to not post. I am expectantly praying for a firm diagnosis on Wednesday with treatment. If not that at least some testing of any kind to figure out once and for all if this is truly NS (or MS) and find something to help me. See, I start running on and on about it ...take care and I will let you know what happens. Terri G. > > Terri G > Hey Lady! I've missed your emoticons & your humor. Get as well as they can make you & check in when you feel up to it/in the mood. > > > > Join our Sock Challenge for Orphans in Kazakhstan > http://groups. yahoo.com/ group/Mittens_ for_Akkol/ > > > grannylunatic@... > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Traci, My first LP 8 years ago showed oligliclonal bands. All the rest have been normal. My MRI's are all negative but they have not done the L-spine and below. I have problems with mutlicranial neuropathy, neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly in my legs). Those are the main issues and everything progresses when I am not treated. Prednisone caused myopathy in the thigh muscles and Imuran caused a white count of 1.2 and my LFT's were increasing. I need to start taking my vitamin D q 2 weeks because when I went to monthly it went down by 1/2 (currently 13). I have been told I am crazy, I have MS and that I have NS. The NS comes from s Hopkins and long ago I went to the Medical College of Virginia and he suggested NS. So that it where I stand. You asked! Hee hee. Of course there are all kinds of other strange things but I think I have said enough. Thanks for the prayers and support. I have been having a big pity party and it is time I get over it. Love to all. Terri > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > mosaicgirl1@... writes: > > I just have not felt like my perky self lately so it was best > just to not post. > > Terri, > It is when we aren't our " perky " self, that we need most ot post. It's ok > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I need > some support here. " I know that it's scary when we don't have a firm > diagnosis-- but sick is sick-- and that is what we have in common. You don't always > have to lift others up-- heck. we support the " unperky " also! > > Hugs, > Tracie > > PS. I pray that you will get that dx next week, and know how to proceed > from there. Have they done a spinal tap to see if you have the protein bands > that show up with MS?? > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Traci, My first LP 8 years ago showed oligliclonal bands. All the rest have been normal. My MRI's are all negative but they have not done the L-spine and below. I have problems with mutlicranial neuropathy, neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly in my legs). Those are the main issues and everything progresses when I am not treated. Prednisone caused myopathy in the thigh muscles and Imuran caused a white count of 1.2 and my LFT's were increasing. I need to start taking my vitamin D q 2 weeks because when I went to monthly it went down by 1/2 (currently 13). I have been told I am crazy, I have MS and that I have NS. The NS comes from s Hopkins and long ago I went to the Medical College of Virginia and he suggested NS. So that it where I stand. You asked! Hee hee. Of course there are all kinds of other strange things but I think I have said enough. Thanks for the prayers and support. I have been having a big pity party and it is time I get over it. Love to all. Terri > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > mosaicgirl1@... writes: > > I just have not felt like my perky self lately so it was best > just to not post. > > Terri, > It is when we aren't our " perky " self, that we need most ot post. It's ok > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I need > some support here. " I know that it's scary when we don't have a firm > diagnosis-- but sick is sick-- and that is what we have in common. You don't always > have to lift others up-- heck. we support the " unperky " also! > > Hugs, > Tracie > > PS. I pray that you will get that dx next week, and know how to proceed > from there. Have they done a spinal tap to see if you have the protein bands > that show up with MS?? > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Terri you are in my prayers, we all have to let our hair down (even if it's thinning due to all the drugs) once in awhile. Blessings, marl a Traci, My first LP 8 years ago showed oligliclonal bands. All the rest have been normal. My MRI's are all negative but they have not done the L-spine and below. I have problems with mutlicranial neuropathy, neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly in my legs). Those are the main issues and everything progresses when I am not treated. Prednisone caused myopathy in the thigh muscles and Imuran caused a white count of 1.2 and my LFT's were increasing. I need to start taking my vitamin D q 2 weeks because when I went to monthly it went down by 1/2 (currently 13). I have been told I am crazy, I have MS and that I have NS. The NS comes from s Hopkins and long ago I went to the Medical College of Virginia and he suggested NS. So that it where I stand. You asked! Hee hee. Of course there are all kinds of other strange things but I think I have said enough. Thanks for the prayers and support. I have been having a big pity party and it is time I get over it. Love to all. Terri > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > mosaicgirl1@... writes: > > I just have not felt like my perky self lately so it was best > just to not post. > > Terri, > It is when we aren't our " perky " self, that we need most ot post. It's ok > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I need > some support here. " I know that it's scary when we don't have a firm > diagnosis-- but sick is sick-- and that is what we have in common. You don't always > have to lift others up-- heck. we support the " unperky " also! > > Hugs, > Tracie > > PS. I pray that you will get that dx next week, and know how to proceed > from there. Have they done a spinal tap to see if you have the protein bands > that show up with MS?? > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Terri you are in my prayers, we all have to let our hair down (even if it's thinning due to all the drugs) once in awhile. Blessings, marl a Traci, My first LP 8 years ago showed oligliclonal bands. All the rest have been normal. My MRI's are all negative but they have not done the L-spine and below. I have problems with mutlicranial neuropathy, neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly in my legs). Those are the main issues and everything progresses when I am not treated. Prednisone caused myopathy in the thigh muscles and Imuran caused a white count of 1.2 and my LFT's were increasing. I need to start taking my vitamin D q 2 weeks because when I went to monthly it went down by 1/2 (currently 13). I have been told I am crazy, I have MS and that I have NS. The NS comes from s Hopkins and long ago I went to the Medical College of Virginia and he suggested NS. So that it where I stand. You asked! Hee hee. Of course there are all kinds of other strange things but I think I have said enough. Thanks for the prayers and support. I have been having a big pity party and it is time I get over it. Love to all. Terri > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > mosaicgirl1@... writes: > > I just have not felt like my perky self lately so it was best > just to not post. > > Terri, > It is when we aren't our " perky " self, that we need most ot post. It's ok > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I need > some support here. " I know that it's scary when we don't have a firm > diagnosis-- but sick is sick-- and that is what we have in common. You don't always > have to lift others up-- heck. we support the " unperky " also! > > Hugs, > Tracie > > PS. I pray that you will get that dx next week, and know how to proceed > from there. Have they done a spinal tap to see if you have the protein bands > that show up with MS?? > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Terri, Post. It's how we cope with our lives and this mess of a disease. It's how we find compassion and ways to keep coping. I myself have been having a week from sarc-hell. I'll post, myself, on that tomorrow when I have more time on the computer. Believe me I know the doctor-hell that's out there. How they can't even agree amongst themselves. It's what we have to deal with. Sometimes we need to talk to get ourselves through that pity party before it takes a bad turn. hugs and prayers and good thoughts S.mosaicgirl1 wrote: Traci, My first LP 8 years ago showed oligliclonal bands. All the rest have been normal. My MRI's are all negative but they have not done the L-spine and below. I have problems with mutlicranial neuropathy, neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly in my legs). Those are the main issues and everything progresses when I am not treated. Prednisone caused myopathy in the thigh muscles and Imuran caused a white count of 1.2 and my LFT's were increasing. I need to start taking my vitamin D q 2 weeks because when I went to monthly it went down by 1/2 (currently 13). I have been told I am crazy, I have MS and that I have NS. The NS comes from s Hopkins and long ago I went to the Medical College of Virginia and he suggested NS. So that it where I stand. You asked! Hee hee. Of course there are all kinds of other strange things but I think I have said enough. Thanks for the prayers and support. I have been having a big pity party and it is time I get over it. Love to all. Terri > > > > > > I just have not felt like my perky self lately so it was best > just to not post. > > Terri, > It is when we aren't our "perky" self, that we need most ot post. It's ok > to reach out when we are feeling vulnerable. It's ok to say-- "guys, I need > some support here." I know that it's scary when we don't have a firm > diagnosis-- but sick is sick-- and that is what we have in common. You don't always > have to lift others up-- heck. we support the "unperky" also! > > Hugs, > Tracie > > PS. I pray that you will get that dx next week, and know how to proceed > from there. Have they done a spinal tap to see if you have the protein bands > that show up with MS?? > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Terri, Post. It's how we cope with our lives and this mess of a disease. It's how we find compassion and ways to keep coping. I myself have been having a week from sarc-hell. I'll post, myself, on that tomorrow when I have more time on the computer. Believe me I know the doctor-hell that's out there. How they can't even agree amongst themselves. It's what we have to deal with. Sometimes we need to talk to get ourselves through that pity party before it takes a bad turn. hugs and prayers and good thoughts S.mosaicgirl1 wrote: Traci, My first LP 8 years ago showed oligliclonal bands. All the rest have been normal. My MRI's are all negative but they have not done the L-spine and below. I have problems with mutlicranial neuropathy, neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly in my legs). Those are the main issues and everything progresses when I am not treated. Prednisone caused myopathy in the thigh muscles and Imuran caused a white count of 1.2 and my LFT's were increasing. I need to start taking my vitamin D q 2 weeks because when I went to monthly it went down by 1/2 (currently 13). I have been told I am crazy, I have MS and that I have NS. The NS comes from s Hopkins and long ago I went to the Medical College of Virginia and he suggested NS. So that it where I stand. You asked! Hee hee. Of course there are all kinds of other strange things but I think I have said enough. Thanks for the prayers and support. I have been having a big pity party and it is time I get over it. Love to all. Terri > > > > > > I just have not felt like my perky self lately so it was best > just to not post. > > Terri, > It is when we aren't our "perky" self, that we need most ot post. It's ok > to reach out when we are feeling vulnerable. It's ok to say-- "guys, I need > some support here." I know that it's scary when we don't have a firm > diagnosis-- but sick is sick-- and that is what we have in common. You don't always > have to lift others up-- heck. we support the "unperky" also! > > Hugs, > Tracie > > PS. I pray that you will get that dx next week, and know how to proceed > from there. Have they done a spinal tap to see if you have the protein bands > that show up with MS?? > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Terri, You sound like so many of us, spend a few years on prednisone, and the body starts atrophying, and then the signs that were there are masked-- or maybe in remission, and no one knows what to do-- so we must be "crazy", "depressed", "hormonal" or all of the above. We all know that we're not all of the above, but that the issues and frustrations of seeing our bodies become alien to us-- is depressing on it's own. You know my lecture on depression-- it's a secondary issue to not getting adequate medical care... I see you take Vit D injections-- can you handle getting out into the sunshine for a few minutes each day. Even in overcast skys, 10 minutes outside makes our bodies produce it's own Vit D to the amount we generally need-- add the D that we get from the foods we eat-- and it is sunshine that activates it-- and that should do the trick. It truly does help lift the "depression" fog that so many of us suffer with. I personally am finding that the synergy of nutrients and vitamins is skewed in my body-- so it is so important to get what we can from nature to enhance what is happening to us. For me, so much of my neuropathy is from mineral defiency, and from high blood sugar. IT is true that once permanent damage has been done, it's gonna be hard to repair-- but at least if we are doing what we can nutritionally-- we're taking care of ourself in a positive way. (My take guys) I'm fortunate in that I have a wonderful DC that has a secondary degree in nutrition, and is helping me along the way. She has introduced to a wonderful Program--THE SCHWARZBEIN PROTOCOL-- that is helping me get my adrenals back into sync, and in time, we'll get some healing going on. I already feel better with just the few changes I've made. The book is written by an Endocrinolgist, and is wonderful. It makes more sense to me than all the rest. It sounds like it would be good for your MD's to check your spinal fluid, and see what kinds of proteins are messing with you. TNF-a and TNF-b studies would also be a good idea. These are blood tests- but if your TNF-a is high, then you know it's active auto-immune. I don't know that TNF-a is high in MS-- but it's really common in us! So Imuran didn't work-- have they tried Methotrexate, Plaquenil or Arava? You take on one at a time, so if you do have side effects, we know what causes the problem. MTX and Plaquenil are a good combo for many of us, and if you have liver problems, you can do MTX injections and bypass the liver. Take Milk Thistle also-- along with Folic Acid, and you can help avoid liver and anemia problems. Terri, I am glad you posted, and that you shared what is going on. And yeah, I'm even glad I asked! My heart goes out to all of us, Hugs, Tracie NS Co-owner/moderator Traci,My first LP 8 years ago showed oligliclonal bands. All the rest havebeen normal. My MRI's are all negative but they have not done theL-spine and below. I have problems with mutlicranial neuropathy,neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly inmy legs). Those are the main issues and everything progresses when I amnot treated. Prednisone caused myopathy in the thigh muscles and Imurancaused a white count of 1.2 and my LFT's were increasing. I need tostart taking my vitamin D q 2 weeks because when I went to monthly itwent down by 1/2 (currently 13). I have been told I am crazy, I have MSand that I have NS. The NS comes from s Hopkins and long ago I wentto the Medical College of Virginia and he suggested NS. So that itwhere I stand.You asked! Hee hee. Of course there are all kinds of other strangethings but I think I have said enough. Thanks for the prayers andsupport. I have been having a big pity party and it is time I get overit.Love to all.Terri>>>> >> I just have not felt like my perky self lately so it was best> just to not post.>> Terri,> It is when we aren't our "perky" self, that we need most ot post. It'sok> to reach out when we are feeling vulnerable. It's ok to say-- "guys, Ineed> some support here." I know that it's scary when we don't have a firm> diagnosis-- but sick is sick-- and that is what we have in common. Youdon't always> have to lift others up-- heck. we support the "unperky" also!>> Hugs,> Tracie>> PS. I pray that you will get that dx next week, and know how toproceed> from there. Have they done a spinal tap to see if you have the proteinbands> that show up with MS??>>>> **************The year's hottest artists on the red carpet at theGrammy> Awards. Go to AOL Music.> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)> Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Terri, You sound like so many of us, spend a few years on prednisone, and the body starts atrophying, and then the signs that were there are masked-- or maybe in remission, and no one knows what to do-- so we must be "crazy", "depressed", "hormonal" or all of the above. We all know that we're not all of the above, but that the issues and frustrations of seeing our bodies become alien to us-- is depressing on it's own. You know my lecture on depression-- it's a secondary issue to not getting adequate medical care... I see you take Vit D injections-- can you handle getting out into the sunshine for a few minutes each day. Even in overcast skys, 10 minutes outside makes our bodies produce it's own Vit D to the amount we generally need-- add the D that we get from the foods we eat-- and it is sunshine that activates it-- and that should do the trick. It truly does help lift the "depression" fog that so many of us suffer with. I personally am finding that the synergy of nutrients and vitamins is skewed in my body-- so it is so important to get what we can from nature to enhance what is happening to us. For me, so much of my neuropathy is from mineral defiency, and from high blood sugar. IT is true that once permanent damage has been done, it's gonna be hard to repair-- but at least if we are doing what we can nutritionally-- we're taking care of ourself in a positive way. (My take guys) I'm fortunate in that I have a wonderful DC that has a secondary degree in nutrition, and is helping me along the way. She has introduced to a wonderful Program--THE SCHWARZBEIN PROTOCOL-- that is helping me get my adrenals back into sync, and in time, we'll get some healing going on. I already feel better with just the few changes I've made. The book is written by an Endocrinolgist, and is wonderful. It makes more sense to me than all the rest. It sounds like it would be good for your MD's to check your spinal fluid, and see what kinds of proteins are messing with you. TNF-a and TNF-b studies would also be a good idea. These are blood tests- but if your TNF-a is high, then you know it's active auto-immune. I don't know that TNF-a is high in MS-- but it's really common in us! So Imuran didn't work-- have they tried Methotrexate, Plaquenil or Arava? You take on one at a time, so if you do have side effects, we know what causes the problem. MTX and Plaquenil are a good combo for many of us, and if you have liver problems, you can do MTX injections and bypass the liver. Take Milk Thistle also-- along with Folic Acid, and you can help avoid liver and anemia problems. Terri, I am glad you posted, and that you shared what is going on. And yeah, I'm even glad I asked! My heart goes out to all of us, Hugs, Tracie NS Co-owner/moderator Traci,My first LP 8 years ago showed oligliclonal bands. All the rest havebeen normal. My MRI's are all negative but they have not done theL-spine and below. I have problems with mutlicranial neuropathy,neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly inmy legs). Those are the main issues and everything progresses when I amnot treated. Prednisone caused myopathy in the thigh muscles and Imurancaused a white count of 1.2 and my LFT's were increasing. I need tostart taking my vitamin D q 2 weeks because when I went to monthly itwent down by 1/2 (currently 13). I have been told I am crazy, I have MSand that I have NS. The NS comes from s Hopkins and long ago I wentto the Medical College of Virginia and he suggested NS. So that itwhere I stand.You asked! Hee hee. Of course there are all kinds of other strangethings but I think I have said enough. Thanks for the prayers andsupport. I have been having a big pity party and it is time I get overit.Love to all.Terri>>>> >> I just have not felt like my perky self lately so it was best> just to not post.>> Terri,> It is when we aren't our "perky" self, that we need most ot post. It'sok> to reach out when we are feeling vulnerable. It's ok to say-- "guys, Ineed> some support here." I know that it's scary when we don't have a firm> diagnosis-- but sick is sick-- and that is what we have in common. Youdon't always> have to lift others up-- heck. we support the "unperky" also!>> Hugs,> Tracie>> PS. I pray that you will get that dx next week, and know how toproceed> from there. Have they done a spinal tap to see if you have the proteinbands> that show up with MS??>>>> **************The year's hottest artists on the red carpet at theGrammy> Awards. Go to AOL Music.> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)> Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
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