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Un diagnosed

Hi. I have not been diagnosed with Ms asset but I am seeing a new nauroligist in a few weeks. Sorry for the long story but for a few years I've had a numb arm and struggle to feel my toes. This went on for a while with another issue thats was sinus problems. In 2019 everything changed. I was training for an half marathon and kept collapsing. I had history of this. It was never after a run more when at rest. I could no longer stand heat. 2 weeks after the marathon I was in agony in my face and struggling with the whole of my left side. Was diagnosed with trigeminal nauralga but nauro surgeon couldn't understand why the whole of my side was affected I had an mri that showed no problems but it seemed I had atypical nauraga as I had constant pain and shocks. Then I was referred a nauroligist that ran a load of blood tests and I had tests on my arm and leg. Cannot remember the name but constited of electric shocks and needles put in. Results showed major nerve and muscle weakness. An mri on my neck did show my nerves and spinal cord are pinched. An mri on lower back just showed normal wear and tear. I'm struggling so much. Constant numbness like I have a permanent dead arm and leg and the strange one that my nauro surgeon cannot figure out is when the pain in my face starts it then goes down my body so within 20 mins of face pain my arm is limp and I cannot walk. Balance is all over the place. And now I'm collapsing all the time. If I have been rushing around I collapse. Its strange as I'm fully awake but cannot control my limbs. I have time to get on floor but then I cannot move or open my eyes or speak. I can hear everything but cannot tell anyone I'm ok. It passes pretty quickly then apart from being really tired and the deadness feeling I'm ok. Plus now I'm starting to get the worse spasms on my chest and back. My colleague thought I was having a heart attack and called an ambulance. I have had loads of tests on my heart and all fine. Am I going crazy or does this sound like ms. I collapsed yesterday just walking my dog. I am now to scared to be on my own

  1. Hi, . First, I am so sorry you have been going through all of this for so long. It definitely sounds like something is up with your body and I am glad you are seeking answers from your doctors.

    Also, has your doctor ruled out other conditions? There are a number of conditions that mimic MS symptoms. You can read about those conditions here --

    And, here's a list of more typical MS symptoms. Keep in mind that not every symptom a person may experience with MS is included on this list --;

    I can't tell you if what you are experiencing is MS or not. Obviously, something is going wrong in your body and it needs to be addressed and treated, whatever it may be. While your symptoms could be MS, they could be something else entirely.

    Since it sounds like your MRIs showed no lesion activity (a main marker of MS), your physician may be looking at other conditions. And since your symptoms are worsening, I would definitely keep pushing your doctor for a proper diagnosis.

    Please know you are not alone in this. Whether you have MS or another neurological condition, please know you are welcome here and you are welcome to ask questions. We cannot provide medical advice or diagnosis, for your safety, but we are happy to help in any way we can.

    Best, Erin, Team Member.

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