uncontrollable foot, toe movement and leg spasms, tingling, numb

[shineoflight]

I am 34 yr old female and after a bout of bells palsy, i started getting nerve issues shortly after. maybe coincedence. it started in my right toe, just moving uncontrollably and now over the years it has spanned to both right and left leg, with toes moving all the time by themselves, spasms in my feet and legs with creepy crawlies, tingling numbness, coldness, ( diabetes ruled out) also my right hand pinky spasms on its own constantly. i do get spasms elsewhere such as face with tingling even inside my mouth but that is more rare and comes and goes, but the legs and feet are so severe and i have lost such quality of life. several years of off and on visits to neuro. sporadic mris show nothing and latest test was bone scan of the spine. I have honestly given up getting any sort of dx as the people i go see tell me they cant figure it out and even had one nuero surgoen tell me id prolly never get a dx.  i get shocks of pain too, like that current of electricity followed by spasms.  anyone can give me at least a direction to go in?

[Dimples60]

I thought I was alone. I am dealing with the same things except for the Bells Palsy. I feel all my doctors think I'm crazy. They keep putting me on so many medications. EEG was abnormal so the neurologist put me on 800mg of Tegretol and I never had a seizure. The shooting pain's that make you hollar out loud.....smacking things off you that aren't there.The numbness and burning. I even experienced cold snow flakes all over me. So many meds....neurontin,baclofen,flexeril I can go on.

[Bee833z]

My daughter who is just over 3 1/2 years old recently was admitted into P/ICU. One of her unusual symptoms was a restless twirling of her right foot all night for days. Another that came shortly after was her inability to complete simple three word sentences. My wife and I took her into our local pediatrician and she quickly advised to to have her brain scanned by CT/MRI. the following night she started having involuntary tongue movement and large amounts of thick saliva build up. Up to now a week later all of her tests have came back negative. From waiting on results she's been more irratable stopped talking has uncontrollable bodily limb tensioning and possibly huge headaches that cause the tense body movements. Doctors are trying one medication in hopes that it will cure her. But every night seems as if she is getting worse but during the day she is sometimes happy, aggitated, has headaches, unsure of what she wants, sometimes us in a zoom by like state. Can anyone help us get our precious "Minnie" back to us. Thank you.

[Zacksmomi]

I am sorry to hear about your suffering.  Ususally things that lead you to find us can be scary at best.
It does sound to me ( not an expert) that these are neurological issues, but they can be related to many things other than MS so lets hope we can help you find something out on your own.
You will find some Dr's say that the internet is not a good place to be dx'ing yourself, while others will say...Just go to the internet and see what you can find.  it is suched a mixed issue.
One thing I would like to ask, have you been tested for lyme?  Have you had your B12 levels checked.
My mom's boyfriend has neropathy in his feet for years that no Dr could figure out.  he started a simple B12 supplement and his pain is GONE.  How simple was that.  He was angry with his Dr's but at least he is better. Low B12 can cause a lot of neurological MS mimics.

If you look in the health pages at the top right of this forum you will find a section on MS mimics.  I personally can't rule out MS, but maybe there will be some helpful info there.

I can say you have come to the right place.  This forum is full of amazing people both dx'd and not dx'd.  Stick around and keep us posted.
I hope you find answers soon.

Take care
D