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  • amylm
    I am a mom of two beautiful girls - a 2 year old and a 5 month old. I just found out that I have a demyelinating lesion on my brain, which has been causing vision problems for me for about 2 months now. Everything that could be ruled out has been ruled out, so I am being followed for possible MS. I feel very scared. Does anyone have advice about living in "limbo" like this and managing all of the emotions and feelings that go along with it?
  • Shawnzi66
    I started being tested in June 2012 and was officially diagnosed in February 2013 so I know that being in limbo feeling. This site has been a blessing to me. While I was not sure if I truly had MS I would come here and read different post and I would ask a lot of questions. Everyone here has been great.
  • Antauri
    Hi amylm - your story sounds all too familiar.  I was diagnosed with remitting/relapsing ms about a year ago.  Talk about living "in limbo".  I did not want to take the shots.  I finally went back to the neurologist about a month ago.  Another MRI with contrast showed an active lesion and many other inactive on my brain and spine.  I will be taking my first Aubagio pill tomorrow.  I wish there were more people that have made comments about it.  I am very scared about any side effects.  Right now, I am very tired and have been for quite some time.  I usually go to bed around 7:00 p.m. and could sleep until 10:00 a.m. except that I get up for work at 5:00 a.m.  That is getting very hard too.  My ankles are killing me.  Don't know if it is related but it is making it very hard to walk.  Depression?  I am on meds for that too.  Oh, add to it the hot flashes and periodic double vision.   Keep up with good thoughts, hold your head high and good luck to you.
  • dalealan
    Hi amylm,  I have been where you are and it is tough time.  Try to relax as much as you can and don't worry about the future.  The worry and anxiety only makes it harder.  Research MS so your familiar with it Maybe write down questions and concerns to discuss with your neurologist.  Come to this site for infomation and support.  We all understand what you are going through.  Take of you self  Dale
  • amylm
    Thank you for replying. I am glad to have found this website to educate myself. Just knowing that there are other people out there who have been in my shoes makes me feel a little better about what's been going on. I guess you never know what life is going to throw at you. Taking a lot of deep breaths these days and trying not to stress too much!
  • Splor
    Dont fear taking the shots. I found out I had MS in May of 2007 my dr started me on Avonex once a week and my MRIs havent changed since. It has kept me from forming more lesions and has kept them fro being active. I also wonder about some of you that say you are in limbo while you wait to find out if you have MS or not but do not see where many talk about having a spinal tap along with the MRIs. I understand there is something in the spinal fluid that is a sign for Drs to tell if you have MS or not. I also wanted to talk about I found out about a hormone that works well for some replacing steroid treatments. Its called Acthar and is a gel that is given in shot form subcutaneously. Keep your heads up!
  • Brandy-Jo

    Splor wrote: Dont fear taking the shots. I found out I had MS in May of 2007 my dr started me on Avonex once a week and my MRIs havent changed since. It has kept me from forming more lesions and has kept them fro being active. I also wonder about some of you that say you are in limbo while you wait to find out if you have MS or not but do not see where many talk about having a spinal tap along with the MRIs. I understand there is something in the spinal fluid that is a sign for Drs to tell if you have MS or not. I also wanted to talk about I found out about a hormone that works well for some replacing steroid treatments. Its called Acthar and is a gel that is given in shot form subcutaneously. Keep your heads up!

     

    After a C spine MRI (negative) a brain MRI (that at the time they claimed the 3 lesions were not MS related, in hind sight they are but not typical location), I finally got a lumbar puncture which came back positive for Oligocolonal band (O bands), this made my doctor look a little bit more and did a Thoracic spine MRI. The found 3 MS lesions there (which is now why they think the ones in my brain are MS just again not typical). Lower thoracic spine lesions are the most uncommon place but sure enough I have them- My doc says nothing about me has been "typical" LOL. My doctor almost gave up looking and with friend and family support I kept looking- I just knew I wasn't crazy and something was wrong. Anyway point being said it was thanks to the lumbar puncture that we kept looking. It can't say for sure you have MS but O bands are strongly linked to MS I believe like 90%. THAT being said there were still other things we had to rule out after the positive lumbar puncture.

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