Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 I was diagnosed with Neurosarcoidosis last year. I have a lesion in my spinal cord directly under the brain stem. The inflammation around the lesion is under control, but I have been left with a lot of nerve damage and pain. I initially spent 4 weeks in hospital, two of them at Mayo Clinic. I then went to rehab to re-learn how to walk, use utensils, do basic self-care, etc. I am lucky to no longer be in a wheelchair, but I have a lot of difficulty walking, using my hands, and so forth, so I am fairly isolated. I have been feeling pretty overwhelmed and down, so my cousin told me to try this support group. I'm not sure of the protocol, so excuse me if I breach etiquette. Anyway, hi everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi ,welcome I'm sorry you have to deal with this disease, but we welcome you here, you well find that we are in the same boat, so to speak. we are dealing with NS in some form. What medications are you on. please feel free to ask questions, if you scroll to the bottom of the emails you will find a link that can give you more information Regarding NS. I'm glad to hear you are walking again, keep it up. My Neuro told me to what you can for as long as you can, so I'm glad you were able to get back the use of your feet and hands. I have a lot of trouble walking too, but I just keep on doing it, some days are a real struggle, and others are better. I am on Remicade every 5 weeks, it has really helped me a lot, there are many here on different types of medication. We are a very supportive group with a lot of love to share, but we are all like you sick, and dealing with different levels of Sarcoid. I hope you feel at home here. Blessings, Marla I was diagnosed with Neurosarcoidosis last year. I have a lesion in my spinal cord directly under the brain stem. The inflammation around the lesion is under control, but I have been left with a lot of nerve damage and pain. I initially spent 4 weeks in hospital, two of them at Mayo Clinic. I then went to rehab to re-learn how to walk, use utensils, do basic self-care, etc. I am lucky to no longer be in a wheelchair, but I have a lot of difficulty walking, using my hands, and so forth, so I am fairly isolated. I have been feeling pretty overwhelmed and down, so my cousin told me to try this support group. I'm not sure of the protocol, so excuse me if I breach etiquette. Anyway, hi everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hey welcome. I am sorry you had to find us this way but glad you did. This is a great bunch of people. Good advice, information and great listeners. Go ahead and talk good or bad we will listen and help whenever we can. Jackie from Wisconsin Hi. My name is ... >I was diagnosed with Neurosarcoidosis last year. I have a lesion in my >spinal cord directly under the brain stem. The inflammation around the >lesion is under control, but I have been left with a lot of nerve damage >and pain. I initially spent 4 weeks in hospital, two of them at Mayo >Clinic. I then went to rehab to re-learn how to walk, use utensils, do >basic self-care, etc. I am lucky to no longer be in a wheelchair, but I >have a lot of difficulty walking, using my hands, and so forth, so I am >fairly isolated. I have been feeling pretty overwhelmed and down, so my >cousin told me to try this support group. I'm not sure of the protocol, so >excuse me if I breach etiquette. > Anyway, hi everyone. > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > 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 October 3, 2009 Report Share Posted October 3, 2009 Hi I also have Neurosarc and it's trying to clog my 4th ventricle. This is a great friendly group with lots of knowledge and I hope you will feel comfortable here. in 'tucky Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: Hi. My name is ...To: Neurosarcoidosis Date: Saturday, October 3, 2009, 12:46 PM I was diagnosed with Neurosarcoidosis last year. I have a lesion in my spinal cord directly under the brain stem. The inflammation around the lesion is under control, but I have been left with a lot of nerve damage and pain. I initially spent 4 weeks in hospital, two of them at Mayo Clinic. I then went to rehab to re-learn how to walk, use utensils, do basic self-care, etc. I am lucky to no longer be in a wheelchair, but I have a lot of difficulty walking, using my hands, and so forth, so I am fairly isolated. I have been feeling pretty overwhelmed and down, so my cousin told me to try this support group. I'm not sure of the protocol, so excuse me if I breach etiquette. Anyway, hi everyone. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi , NS hits us hard and it's something we never ever expected, it changes our lives, but you can beat it. Keep a positive attitude, get plenty of rest and sunlight. The remedy is different for all of us, for me it was getting outside in the sun and keeping my dogs close by (it's almost as if they knew I was sick and needed help). You will get better and you've joined the right group. wishing you the best... Rick Quote Link to comment Share on other sites More sharing options...
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