Back to all discussions

New to forum, awaiting diagnosis but have questions

Hi all, I’m 29 and checked in to the emergency room at the hospital 2 days ago. I have been unable to move my toes in my left foot for the last 3 weeks and have a stepping gait in my left foot. I have been having issues with fine motor skills in my hands.
I saw a neurologist about my toes and hands andhe said he thought I had damaged my perineal nerve and may have carpal tunnel on my hands. He set me up for a nerve test on January 9th. I started getting weak about a week ago especially in my legs. I was also getting incredibay bad restlessness predominantly in my legs. I called the neurologist and he told me I had anxiety.
Over the last 5 days I became weaker and weaker. The night before I went to the hospital I was trying to put together a walk in kitchen toy for my son for Christmas. I kept telling myself it was just anxiety and that my weakness was in my head and that I wasn’t really off balance.
I tried as hard as I could for 4 hours and could not complete it. I couldn’t use the screw driver, couldn’t get my hands to work, was falling over sideways while sitting down and realized i wasn’t making things up in my head something was really wrong.
I had an MRI when I was in the ER the results showed many ‘abnormalities’ in the left and right side of my brain in the gray matter. (Sorry am new to some of the lingo)
I was told I may have MS and they would do further testing. Today I had a lumbar puncture and another MRI to capture regions that were not captured in the first MRI.
I am expecting some more clarity tomorrow and obviously hope it ends up being nothing but based on the results I think that’s unlikely. At this point I have to be holding on to something or someone because my legs are so weak and I’m so off balance. I have been sitting down to use the bathroom because of this and today when trying to stand up and holding onto one of the bars by the toilet I fell over.
Sorry if I am being long winded, I guess my real question is if anyone had similar symptoms to me when they were diagnosed and more specifically if so has anyone regained their balance and ability to walk.
I have a 2 year old little boy and I guess I’m hoping I am going to be able to carry my son again and hopefully have somewhat of a normal life.
I know everyone’s journey is different and there are no guarantees. I also know I’m jumping the gun a little bit without an official diagnosis but am really hoping to connect with people who have walked through this. I’m just feeling a little bit alone and uneducated at this point.
Thanks for reading, looking forward to hopefully seeing a response or two. I will update once I have a confirmed diagnosis whatver that may be. Thanks!

  1. Hi @bp49, thank you so much for sharing what you're going through. I understand this must feel so scary and stressful, especially without getting any clear answers or an official diagnosis. Unfortunately, many of our community members have also experienced lengthy roads to a diagnosis, as MS can be difficult to determine. One of our advocates explains why in this article here:

    It's important to note that personal experiences will vary and what works for one person may not for another, but you’re not alone in experiencing balance and walking difficulties - these articles may be helpful and/or of interest to you: and

    Did your results come in from your recent tests? I hope you get some clear answers soon. Please do keep us posted on how you’re doing. Best wishes, Shelby, Team Member

    1. My name is Susan. I have had multiple sclerosis for 35 years. Have two adult kids and four grandchildren. Have used the following treatments: Steroids, Betaseron, Avonex and the latest is medical infusion for 8 hours. Sorry don’t remember the name of medicine. Have had bladder issues for 35 years. Now taking a medicine called Oxybutynin twice a day.
      Strongly suggest you find a safe way to care for your baby, family members close by. Neurologist doctors treat Multiple Sclerosis. I am here if you need a friend,
      Susan B. Cooper

      or create an account to reply.