Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 > > So Friday (3/20) I went for a spinal tap because now they are thinking I may have both MS and neurosarcoid based on my very freaky MRI- it was a repeat MRI one week after the first one that kept me in the machine for 2 1/2 hours except for the 5 minutes it took to start the IV and give me the contrast. It took them 3 sticks to get the spinal fluid- the first two tries I bled too much because the hit vessels, so they finally got it the 3rd try... Now I wait for results to see where we go from here re: treatment. I have been feeling really down lately- I guess it's because I hate having no control at all over things. i am much better at giving care to others than receiving it. I hope you all are feeling a little better- the nice weather is coming and I hope it will help us all to feel better! Have any of you ever heard of someone having both NS and MS? Hopefully it is just the sarc- I have pulm sarc so it will be easier to treat if I just have the one and not both. You all remain in my prayers! > Take Care All, > Dawn > PS- HAPPY BIRTHDAY MARLA!!! > (mine is 3/23- the big 4-0 this year lol) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Happy Birthday Dawn, and thanks for the birthday greeting. I know Ron was being tested for MS as well as NS, and I think he was told he had MS, hopefully he will read thisand answer, as my memory is so bad. I just had my Remicade yesterday and I still can't remember a thing. I'm also hurting like all over, so need to hit the bed early. and by the way, my 40's especially the early 40s weregood, I just turned 51 hurry! but I'm still here:). Take care Dawn, Marla > > So Friday (3/20) I went for a spinal tap because now they are thinking I may have both MS and neurosarcoid based on my very freaky MRI- it was a repeat MRI one week after the first one that kept me in the machine for 2 1/2 hours except for the 5 minutes it took to start the IV and give me the contrast. It took them 3 sticks to get the spinal fluid- the first two tries I bled too much because the hit vessels, so they finally got it the 3rd try... Now I wait for results to see where we go from here re: treatment. I have been feeling really down lately- I guess it's because I hate having no control at all over things. i am much better at giving care to others than receiving it. I hope you all are feeling a little better- the nice weather is coming and I hope it will help us all to feel better! Have any of you ever heard of someone having both NS and MS? Hopefully it is just the sarc- I have pulm sarc so it will be easier to treat if I just have the one and not both. You all remain in my prayers! > Take Care All, > Dawn > PS- HAPPY BIRTHDAY MARLA!!! > (mine is 3/23- the big 4-0 this year lol) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Hi Everyone! I went to my sarc doctor today for a recheck to see if the cellcept is working. I feel like crying...actually did cry. He seems to think that I may have some new brain lesions- and now thinks I may have cardiac sarc as well. I already have pulm and joint sarc as well as the neurosarc. Do any of you have the cardiac sarc as well as the others? I am feeling very overwhelmed and upset- I was really hoping things would get better! I am scheduled for another MRI of my brain and a treadmill echo as well. I hope this finds you all pain free and happy! You all remain in my prayers! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Dawn, what is he basing the possibility of cardiac sarc on? Forgive me for not remembering where you live, etc., but are you comfortable & confident with your medical team? That is, do you feel your doc(s) are up-to-date with latest research & treatment options? Are you seen at a major medical center? I'm asking because sometimes we stay with what we know, and maybe need to take a leap of faith in seeking other opinions. Most importantly, I'm sorry that you didn't get the news you were hoping for. The crying is okay, actually healthy. Research has shown that tears contain stress hormones, so that you are washing away some of that stress. Tears from peeling onions doesn't contain them, so the body can make that distinction. Pretty cool, huh? Did I distract you for just a few seconds?!? Hope so, and here come some gentle hugs from Indiana. (((Dawn))) Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver > To: Neurosarcoidosis > Date: Tue, 16 Jun 2009 02:14:02 +0000> Subject: Hello All!> > Hi Everyone!> I went to my sarc doctor today for a recheck to see if the cellcept is working. I feel like crying...actually did cry. He seems to think that I may have some new brain lesions- and now thinks I may have cardiac sarc as well. I already have pulm and joint sarc as well as the neurosarc. Do any of you have the cardiac sarc as well as the others? I am feeling very overwhelmed and upset- I was really hoping things would get better! I am scheduled for another MRI of my brain and a treadmill echo as well. > I hope this finds you all pain free and happy!> You all remain in my prayers!> Dawn> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Rose, Thank you for the hugs and reassurance! I live in western NY and travel 2 hours to see my sarc docs at Strong Memorial in Rochester. They are a large teaching hospital affiliated with the Univ. of Rochester med school. I love my docs there- they have been wonderful- and my pulm doc is as sharp as they come! He is investigating the possibility of cardiac sarc because I have been having some new symptoms. I was otherwise healthy before Dec. 2008 when I was diagnosed with sarc- just turned 40 in March. Over the last 2 weeks, I have had several episodes of palpitations/tachycardia with no obvious cause. Out of the blue my BP is very high (normally I run very low). Worsening shortness of breath, and irregular heartbeat. He says we need to determine if it is truly cardiac sarc. I am scheduled for a treadmill echo- I have never heard of this before...I have seen stress tests on a treadmill but never a treadmill echo...so I guess I'll see what it's all about. He is then sending me to see cardiology. I hate sarc!!! I will keep you posted. This group has been an amazing help to me- even when I am not posting I am still following and praying for you all! Take Care and Thanks Again! Hugs back at you! Dawn > > > Dawn, what is he basing the possibility of cardiac sarc on? Forgive me for not remembering where you live, etc., but are you comfortable & confident with your medical team? That is, do you feel your doc(s) are up-to-date with latest research & treatment options? Are you seen at a major medical center? I'm asking because sometimes we stay with what we know, and maybe need to take a leap of faith in seeking other opinions. > > > > Most importantly, I'm sorry that you didn't get the news you were hoping for. The crying is okay, actually healthy. Research has shown that tears contain stress hormones, so that you are washing away some of that stress. Tears from peeling onions doesn't contain them, so the body can make that distinction. Pretty cool, huh? Did I distract you for just a few seconds?!? Hope so, and here come some gentle hugs from Indiana. (((Dawn))) > > > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > " How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. " > > ~ Washington Carver > > > > > > > To: Neurosarcoidosis > > From: dawnschwartz@... > > Date: Tue, 16 Jun 2009 02:14:02 +0000 > > Subject: Hello All! > > > > Hi Everyone! > > I went to my sarc doctor today for a recheck to see if the cellcept is working. I feel like crying...actually did cry. He seems to think that I may have some new brain lesions- and now thinks I may have cardiac sarc as well. I already have pulm and joint sarc as well as the neurosarc. Do any of you have the cardiac sarc as well as the others? I am feeling very overwhelmed and upset- I was really hoping things would get better! I am scheduled for another MRI of my brain and a treadmill echo as well. > > I hope this finds you all pain free and happy! > > You all remain in my prayers! > > Dawn > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
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