In 2009 I was diagnosed with MS. I have had several courses of treatment that made me significantly ill. In 2010, I made a quality of life decision to discontinue treatments, as I was having no success with any of them. This was a horribly emotional decision, but I made it and have been living with symptoms, changed my lifestyle, my job, my address, everything to eliminate stress, as stress is a main contributor to relapses. I went last week for an MRI, and the doctor told me I was misdiagnosed in 2009, and there is no evidence of lesions or plaquing. He wants me to go through testing for auto immune diseases, etc. From 2002 through 2009, I had gone through every test imaginable. Starting over has me swirling emotionally. I should mention that this is a new doctor. My doctor says that this should be good news, that I dont have MS. and it is. but, I am back to stage one. My symptoms are exactly like ms. I have had double vision, i lost sight in one eye for 3 months. I have had black spots in my field of vision that caused me to be unable to drive for nearly a month, I drag the right foot, I am in pain all day every day. I get very weak muscles that at times, cause me to use a cane. I have also gone completely unable to stand, to the point where my daughter had to carry me to the bathroom. I have memory problems, cognitive thinking issues, My skin often feels like it is sunburn, but there is nothing there. It also gets very itchy, but is not at all dry. There are times I can not even lift my arms over my head, they are too weak to do anything. I was unable to hold my granddaughter when she was born in fear that I would drop her. My biggest problem is the pain and weakness. The pain makes me so exhausted that by the end of the day, I go to bed by 7:30 to lay and watch a movie or something.  I am not an over-weight person, and try to stay busy through hiking, kayaking, fishing.  I am limited as to the type of exercise I am capable of doing due to my lack of good balance. So, My question is, does any rare medical condition come to mind that can manifest itself as MS does?  I have been tested for many more notable autoimmune diseases such as lupus. I am desperate to not have this take another 10 years. I have been through so much!
Hi, I am sorry to hear that you are suffering from pain and weakness. I agree it must be very difficult having been told you have MS for nearly a decade and now being told it may be something else. I would recommend a few things1. Get your old records - everything including tests, progress notes, imaging results and medications from your previous doctor's office. 2. I would suggest getting a second opinion-the reason is that if you were treated for MS for so many years there must have been a reason to diagnose you with the condition. If your new doctor thinks it's not MS and wants to embark on a whole new set of investigations, I think its worthwhile getting a second opinion before spending thousands of dollars on costly tests3. Since pain and weakness are your main symptoms, I would recommend seeing a Physical therapist. Physical therapy is often very helpful to improve strength and endurance. Also, consider seeing a pain specialist to discuss other ways to manage pain. Consider alternative ways to reduce stress including meditation and yoga. Please let me know if that was helpful. Thanks!