Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Dawn, Belated Happy Birthday-- my son is also among you-- his bd was the 25th, and he's now 26. Seems like just yesterday he was a boy, and what an incredible man he's become! As for NS and MS-- yes, you can have both. MS fortunately has some decent research money going out, and they are having some good success with slowing it down-- lets hope that you don't have it-- but hey the treatment is pretty close to the same for either one. As for learning to accept help.... This seems to be an issue for all of us. This last week I had to accept the fact that I could not start the fire (we heat exclusively with wood) and I was too sick to start the woodstove. So had to come home and get it going on his lunch hour, and then the following day I had to call and have him take only a 1/2 hr lunch, and come home to take me into the MD's. For the first time, I was so weak that I had to have him push me in a wheelchair across the hospital to get a chest xray, and my lungs (bronchials) were packed with mucus and inflammation- and I was having a majorally hard time. We both shed tears over that chair-- no races for me this week. There is a great book-- BEYOND CHAOS that is about a husbands journey alongside his chronically ill wife-- an must read! Back to the dual diagnosis-- many of us are told we have MS and even go thru treatment for it, then it turns out that it was NS the whole time. Symptoms are the same-- much of the time. What the difference is is that MS has a protein band in the spinal fluid that NS does not have- so they have to rule out the MS before they are comfortable with NS. Even then they want to keep thinking it's rare-- so they hedge... Don't take on the worry of a dual diagnosis-- and see yourself getting the care you need-- whatever the outcome. Take care, Tracie NS Co-owner/moderator Subject: Re: Hello All!To: Neurosarcoidosis Date: Sunday, March 22, 2009, 5:58 PM >> 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 30, 2009 Report Share Posted March 30, 2009 I agree here on the book "Beyond Chaos". Definitely helpful and insightful. Debbie From: njones46229 <njones46229@ yahoo.com>Subject: Re: Hello All!To: Neurosarcoidosis@ yahoogroups. comDate: Sunday, March 22, 2009, 5:58 PM >> 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 17, 2009 Report Share Posted June 17, 2009 hi dawn, i too live in western ny about 20 miles south of buffalo. i did not have any luck finding sarc doctors here so i travel monthly to cleveland clinic. i would love to know more about your situation , doctors , and amount of travel you do for this dreaded sarc monster ! i have neurosarcoidosis and stage one pulm sarc. what meds are you on ? hope to hear from you soon. ~~~~~barb To: Neurosarcoidosis Sent: Wednesday, June 17, 2009 7:46:39 AMSubject: Re: Hello All! 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@ yahoogroups. com> > 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/Neurosarco idosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups. yahoo.com/ group/Neurosarco idosis/database > > > > Quote Link to comment Share on other sites More sharing options...
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