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Help for newly diagnosed

I was just diagnosed 3 weeks ago after experiencing loss of vision and eye pain (incorrectly diagnosed by 3 doctors as optic migraine) about two months ago. The vision became a little better but blurry and then I got numbness and eventually weakness in the leg and difficulty walking (incorrectly diagnosed as nerve damage in the hip). Eventually after much pleading I got an MRI and it showed approximately 12 significant lesions and a number of smaller ones in the brain. Suggested that cervical had 3 lesions at the C3 level but the spinal MRI wasn't done at that point (don't have results yet for it).

I don't know what to do now. I still can't see. I still can't walk. Will these ever come back. I'm 40 years old and I can probably trace this back for at least 10 years. I have significant bladder/bowel issues and have for many years now. I'm still waiting for the MS neurologist appointment. I'm so confused. I just want to surrender. I am a fitness instructor and a student. I can't move and I can't read so my life is just on hold. I don't even know should I be resting or trying to walk. I'm so confused. Help me.

  1. Hi Karen41002. Thank you for reaching out to the community. Being newly diagnosed with a life-altering condition like MS can be so overwhelming and frightening. You are not alone! Many in our community have shared stories from the time just after they were diagnosed with MS. Two of the best things you can do for yourself at this time are -- reach out (like you did here!) and learn more about MS. One of our contributors wrote an excellent article for the newly diagnosed -- It's full of tips and understanding of what you're going through. Here is another article from the same contributor on finding some happiness, even in the hard times -- You will find that this community is full of people who truly "get" living with MS. As far as moving, many people with MS find staying active helpful, but they listen to their bodies and pay attention to potential triggers (like heat or stress). It may be a little bit of trial and error at first.

    Many in our community can relate to the bladder/bowel issues you mentioned. In fact, we have a few articles on this topic, like this one --

    I urge you to reach out to those around you. Build a support system that can be there for you on the tough days. The National Multiple Sclerosis Society has LOTS of great resources and support services -- You can also check out our facebook page -- There IS help out there.

    In regards to your upcoming appointment, I suggest that you write down any questions you have and take those questions with you to the appointment. You might also bring along a friend to write down the physician's answers to your questions or you might record the conversation on your phone(if the physician allows it), so you can refer back to that information at a later date. We always *think* we will remember everything, but it's easy to forget things, especially at a first appointment with a new physician.

    I may not know you or your specific circumstances, but I do know that you can do this. You can. And you don't have to do it alone.

    Wishing you a good night! Best, Erin, Team Member.

    1. Hi. I was diagnosed with Crohn's Disease in August 2014 after having surgery to repair a fistula caused by the disease. I'm now gluten and dairy free and not able to eat many fruits or vegetables so nutrition is a huge concern for me. In April 2016 I was diagnosed with eczema and in May 2016 I was finally diagnosed with MS. Looking back, I believe I have had these conditions for most of my life and it was extreme stress that finally pushed me over "the edge" and I started collapsing from my blood pressure going haywire. I had cardiac ablation in 2015 and have a heart monitor implanted in my chest. The last couple of years have been like a roller coaster ride!

      I have tried to find information about other people being diagnosed with 3 different autoimmune diseases and have yet to find any. Any information you can give, would be greatly appreciated!!

      1. Good evening,

        I am sorry to hear about your MS difficulties. My name is Susan I have had multiple sclerosis for 40 years. Strongly encourage you to get help as soon as possible. There are so many medications that can help. The medicines I have used are Betaseron, Avonex, Copaxone, a medicine infusion for 6 hours. Exercise is important to me walking, swimming or lifting hand weights. I have been taking anti depressants as well as bladder medicine. Some of the meds caused me to feel depressed. If I took all the medicine offered to me I could not think or sit still. Finding a good doctor has been so wonderful to me. A Neurologist twice a year and Primary Care physician.
        Given your blindness you should be able to get help immediately. Call 911 and go to an Emergency room and get someone to be your advocate. I will keep you in my prayers,


        Susan B. Cooper

        1. Wow, where do you live?! Rhetorical. My diagnosis was based on vision loss (optic neuritis). It took 7 doctors and one very long day but MS was the winner. Didn’t they use any dye for your MRI scan to see if MS was active? MS is not a fun diagnosis, but in your situation, not knowing seems worse. Good luck either way.

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