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In limbo!

Hello All!

Last June I began having itching and a tingling feeling of my tongue, my PCP noted low vitamin b12 so we assumed all symptoms related to that. In late October I had The nagging feeling that there was something stuck in my shoe at work but nothing was ever there. That feeling progressed to a tingling that over the next few days led to tingling and weakness in my entire L arm and L leg. I am a registered nurse and coincidentally work in Neurology, so I made an appointment with a Neuro who ordered a brain/spine MRI. The MRI showed lesions on my brain, but none on my spine and no other tests (besides my physical exam) showed anything. I currently have what my doctor calls a “working diagnosis” of RRMS, stating she believes we caught things so early that nothing else is showing up. At this time my physical exam shows 4/5 strengths on my L side with hyperteflexia in all areas and a positive Hoffman’s sign on the left. I’ve recently noticed the hyperreflexia seems to be getting worse, it seems that something can hit my leg slight heavier than a normal touch and it causes a reflex reaction. I’ve also started having muscle spasms in my legs, most frequently my feet. They’re never more than a millisecond and not painful, my feet just randomly jump. Has anyone else experienced something similar to this/these symptoms? Were you eventually diagnosed or was something else found? 

Thanks in advance!

  1. Hi @candice967, thank you so much for reaching out here. These symptoms must feel so bizarre and frustrating! I commend you for reaching out to a neurologist right away and prioritizing your health. I am not personally aware of hyperreflexia, but I know that many here experience spasticity which you can read about here: It also looks like this community member experiences hyperreflexia which she mentions in this forum post if you would like to connect with her:

    I hope others will chime in and share if they've had similar experiences. Thanks so much for sharing and please keep us posted on how you're doing. We're here for you as you go through this!

    - Shelby, Team Member

    1. Thank you! I currently see a MS specialist every 6 months. I will check out those posts.

  2. I have the tingling in my tongue, too. No diagnosis, yet, but waiting for my appointment with a neurologist. My symptoms started with dizziness and I was referred to an ENT. After some hearing tests that turned up nothing, I started having tingling in my face and hand. He ordered an MRI that showed an increased t2 signal, that my doctor never mentioned (I saw it on my notes). He insists I am depressed. But I maintain that I'm not, except for my frustration with these symptoms. Now I have this tingling in my tongue, feet, hands, and face, and today my eyes are burning and (I'm not sure if this is just my contacts drying out or my imagination) I have a blurry spot in my right eye.

    I finally expressed my frustrations to my GP and got the referral to the neurologist. I don't want it to be MS but I want answers. I can't be imagining all these weird symptoms.

    1. Hi Abbyrie3 -
      Thank you so much for sharing. We are glad that your GP was able to refer you to the neurologist as these are not normal things happening! We, as you said, also hope it isn't MS - but if it is, you're at the right place.

      Here is some information about numbness/tingling that you may find helpful reading about;

      Please feel free on keeping us updated!!

      Best - Meagan, Team Member

  3. Evening friends, I’ve was diagnosed with progressive MS 4 years ago now and I’ve had numerous problems but one of my real problems is constipation. This may not be your cup of tea but I’ve had different pills and drinks from the consultants but nothing seems to work, has anyone got a really good cure for this because it’s becoming a nightmare.

    1. Hi @candice967 I too am in the limbo stage and send my heartfelt thoughts and good vibes to you! I have MRI scheduled in 6 days. EMG was normal, neuro said it points to more of a central nervous system issue.

      Demoted on Friday at work due to errors/performance. They have no idea what I am going through and don't plan to disclose at this point.

      I am afraid for the future, but I know you, I and everyone else will move forward with this.

      Much Love,


      1. Hello there, I understand what you’re going through because a lot of what you have experienced I also have been there. It’s not great feeling you have no control of your body, i noticed strange movements and feelings a long time before my doctor referred me to a neurologist and even then they dragged there feet before giving a diagnosis, some how i wasn’t surprise at what i was told. That was 4 years ago and slowly but shortly my symptoms have got worse. It’s a waiting game to see what happens next but i stick in there and tell my body that I’m in charge and i will do what i want to do, i understand it’s hard but the best advice i could give anyone is tell yourself every day it’s your body the one you were born with and your not going to let anything take it away from you. Stay calm and be good to yourself.

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