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Joined: Apr 20, 2012

OMG! I feel your pain....we are going through this same thing with

Posted by @mamapearl, Apr 20, 2012

OMG! I feel your pain….we are going through this same thing with my sister and it is all in finding the right neurologist..this is a rare disease and I pray you find the right treatment to reverse this horrifying diagnosis! My sister has been tentatively diagnosed with limbic encephalitis but waiting on blood test to determine if it is a malignancy! Her thyroid antibodies were very elevated so that is how she suspected this problem…her first neurologist just blew her off as having seizure and kept increasing her meds which just made her worse. She has had trouble keeping her balance, loses her muscle tone (fell in the kitchen n could not get up n finally crawled to phone to call her son…the house was smoked up by this time and she could have burned up), has memory problems, cannot eat hardly anything and has lost lots of weight! This has been going on for almost a yr and we are afraid that her problems may not be reversible! It sounds as though your husband is being treated as good as possible and that the Dr are searching hard to find the exact diagnosis but keep researching and even write down everything that is happening so they can hopefully determine what is going on. This may not be completely cureable but is reversible if caught early and it sounds like it has, thank God!!! Please let me know what you find out and what they are going to do to help him. There are iv and ivig treatments. My sister is on steroids now which have helped her memory and her walking somewhat but the fatigue and drowsiness is constant…it’s a “one day at a time” journey and I pray for you to find a complete recovery for your husband!!!! He is too young for this kind of disability,,, my sister is 76 but does not deserve this awful life!!! Remember, this does take a long time to treat but I pray your journey will be short since you sought help early on. This is hard on us loved ones too…God bless you! @jemarsh


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