MdDS Awareness...... Brave girl! Its not easy living with MdDS. Even harder trying to explain this neurological disorder to others as you manage the best you can to get through one day at a time knowing there is no cure and hopefully one day you are able to reach some level of remission, even if only for a short while. MdDS can last hours, days , months or even years! There are things to help calm the symptoms and then there are absolute triggers that can bring it all back to day one. Awareness is so needed because new patients are commonly misdiagnosed ( for example Menieres or vertigo ) and the average patient can spend upwards of $10k / year seeking help from ENTs, Neurologists, Internists and Physical Therapists who really have no understanding of the syndrome. To reach a MdDS diagnosis, you are sent for various tests and examinations ( hearing tests, neurological exams , MRI of the brain and inner ear with and without contrast injected via IV, eye exams, cardiology testing for blockages, ultrasounds of the carotid artery....the list goes on) just to rule out other health conditions first aimed at trying to find out why your gait is off balance and your concentration is so off that your sentences sometimes come out like they were first put in a blender ( I call mine : blender mouth ) all of this before you move on to more advanced testing that is specific to MdDS. You feel a sensation of constant rocking, bobbing motion- sometimes a pulling sensation to one side of a tipped floor, immense headaches and eye pain as you try to concentrate harder to walk or read which usually triggers nausea. It can be a feeling like you are suddenly falling or when you walk, suddenly there is an invisible sinkhole. All of your initial tests will come back negative, no findings, no reason for why you feel the way you do and with each day you pray it will end so that you can get back to doing all the things you once enjoyed, that have now had to have been brought down to baby steps just so you can control the rocking off balance. I leave pamphlets about MdDS with every specialist Ive seen so far, who have tried their best but basically dont know what to tell you. Here is what I have learned: you take care of YOU first so that you are able to take care of others. You eat well ( healthy), omit all sources of caffeine as best you can, you stay hydrated, you make sure you get extra sleep when you can because sometimes the only break in the rocking is when you are finally able to drift off to sleep without feeling like you are about to fall out of your own bed . You meditate, pray, take time outs to de-stress yourself and break down your tasks as small as they need to be so that you are still actively working at getting back to a normal day to day life. It will slowly get better where you can do more. Keep head motion to a minimum when possible to avoid the swoosh that occurs after frequent head turning or rapid eye movement and focus on something when walking. Use a cane if needed, not so much for support as it is to be used as an additional sensory input to tell your brain to break this motion pattern it had adopted as the new norm. Im going to also take Karen Karrs lead and make an awareness video because the medical community needs to know what we ( the patients ) have learned on our own about the condition and share this info to be able to help others to cope with MdDS. Hopefully, through awareness , we would all have / or get near that stage of MdDS called near remission and possibly it could spawn even deeper research to find out what comes next ? How do we fix this permanently !!!!????? Sincerely, Erica Jacoby Initially misdiagnosed MdDS patient of 6 years ( 3 episodes broken up by 2 long remissions. Current episode started May 5, 2014)
Posted on: Fri, 21 Nov 2014 00:48:14 +0000
Trending Topics
Recently Viewed Topics
© 2015