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  • evoashes
    Hi everyone, new to this lovely group. I haven't been diagnosed with MS but all my symptoms seem to fitted almost to a T. I've seen two rheumatologists so far and they ignore everything I say and chop things up to different things. My primary doctor knows something is up but is just as frustrated as me. She is sending me to U of M Rheumatology to try and get some better answers. Hoping it works but my appointment isn't until mid July.

    Anyways... I've been experiencing facial tingling in my cheeks going toward my forehead. I used to notice it years ago but it would only last a few minutes then go away. Just thought I talked to much or something stupid! Lately it's been lasting longer and longer. Last night it lasted for 6 hours. I went up to the ER and they basically said they couldn't do anything for me and I need an MRI of my head which they can't provide. So just waiting for my July appointment. Anyone else experience this? When I look it up online MS is the only thing it really goes to.

    Thank you for listening. =)

    Ashley
  • DontTellTheBoss
    Hi,

    Sorry to hear you've had to go to so many doctors. I did the same thing. Rheumatologist, cardiologist (due to the chest pain that is actually the MS Hug), and now I'm hooked up with a neurologist who specializes in MS and NMO. The Rheumatologist wanted to diagnose Fibromyalgia and my boyfriend said no way. My symptoms, like yours, more on the neurological side than muscular. So we went off to a neurologist. He was able to diagnose straight away after a few weeks of testing and MRIs.

    Maybe you can get a neurology appointment before that next Rheumatology appointment in July.

    I agree with CharlieGirl - write stuff down because it will be easier to track flare-ups. Also, if you can see a neurologist, it will assist with diagnosing whatever is going on.
  • FrancinesAvon
    Hi Ashley,

    Facial tinging was my very first symptom of MS.  I was 23, and they incorrectly diagnosed it as tic deleureux. I wasn't actually diagnosed with MS until my 40's, when I developed numbness in my arms and legs.   I still get facial tingling today, and I'm now 66.  I also get the tingling in my arms and legs and occasionally my entire torso.  I get occasional pain in my arms and legs, and my hands shake very badly, although that could be Essential Tremors, which I could have inherited from my Dad.  Now I've noticed that my voice is starting to shake.  For many years I gave myself injections of Betaseron (Interferon), but I stopped the shots about four years ago and I haven't really noticed a difference.  To look at me, you can't tell there's anything wrong, so I'm thankful for that.  I walk briskly for about 1 1/2 miles each day because I'm determined to stay strong.

    You've got to be your own advocate for your health.  They usually can't diagnose MS until you've had a second symptom, and then you should have an MRI so they can see if you have lesions.  Please don't let the possibility of MS scare you because every case is different.  My MS is always present, but it never incapacitates me.

    Good luck Ashley!

    Francine
  • charliegirl78
    Hi everyone, new to this lovely group. I haven't been diagnosed with MS but all my symptoms seem to fitted almost to a T. I've seen two rheumatologists so far and they ignore everything I say and chop things up to different things. My primary doctor knows something is up but is just as frustrated as me. She is sending me to U of M Rheumatology to try and get some better answers. Hoping it works but my appointment isn't until mid July.

    Anyways... I've been experiencing facial tingling in my cheeks going toward my forehead. I used to notice it years ago but it would only last a few minutes then go away. Just thought I talked to much or something stupid! Lately it's been lasting longer and longer. Last night it lasted for 6 hours. I went up to the ER and they basically said they couldn't do anything for me and I need an MRI of my head which they can't provide. So just waiting for my July appointment. Anyone else experience this? When I look it up online MS is the only thing it really goes to.

    Thank you for listening. =)

    Ashley
    Ah yes...face tingling....mine did that about 8-9 months ago (before my diagnosis).  it was tingling and kind of numb (like when going to the dentist) just around my nose and only half of my top lip.  It was the strangest sensation ever. 

    Hang in there, write it all down!  I say this always, bc your memory will fool you and your idea of how long it last and how often will change when you see it written down.  This MS stuff is a strange, strange thing.  It's ever elusive and frustrating at times....this site is very helpful and you'll see that you aren't alone in any of your symptoms. 

    Best of luck to you with your MRI.  It's one step closer to an answer, even if it means ruling out one thing at a time....
  • evoashes
    Thanks Francine =) I just had an MRI done today I find out the results in a couple days. I've had other things happen over the last 5 or so years and never put any of them together til reading some of these discussions. I always thought it was normal after exercising legs would tingle and feel a bit numb in the feet but apparently its not! Go figure. I also have always had it in my hands but thought it was poor circulation and ignored it. I seem to notice certain things a bit more. So we will see what happens.

    Keep strong! I'm still going to try and do what I normally do no matter what. =)

    Ashley
  • FrancinesAvon
    Everything you just described sounds like MS.  Once you get your MRI results, you should finally know for sure.  I cried when the doctor first told me I had MS because I pictured my future in a wheelchair.  Luckily that hasn't happened.  I hope that whatever you have, it's no more debilitating than what I have because mine isn't debilitating at all.

    Best of luck to you Ashley!

    Francine

  • evoashes
    I do have some muscle issues too. My muscles get fatigued very fast but it feels like they are cramping more than anything. Then after a workout they are so weak it feels like I can barely move them and I get very tingly and spasms. So thats where I'm not sure if it's something else or not. I can only go about 1/4 mile on a stationary bike before my thigh muscles are cramped and my feet are tingling/burning. I did water aerobics Tuesday and I was spent after a half hour. I can't seem to progress anymore. =/


    And I made a neurology appt a week prior to my rheumatology one. And I just had an MRI Monday so waiting for the results still. Thank you guys for the replies =)  
  • DontTellTheBoss
    That is so weird. I get muscle cramps too. Like Charley Horse in my forearms, chest/sternum area, and arches of my feet. My biceps get really, really tired easily too. The other day I was holding something above my head so my boyfreind could see it (he is a foot taller than I) and I thought my arms were going to fall off after about three minutes. But when I exercise, I feel fantastic after I swim, yoga, or lift weights.

    Honestly, I thought it was because I have Syringomyelia and that causes a loss of muscle mass. But good to know it's from MS. Maybe? LOL...? Forget it. That just sounds weird.

    Take care!
    Chez
  • evoashes
    Thats how I am too... my legs get so tired walking up one flight of stairs and I have stairs going into my apartment and you would think I'd be used to it. I lift at work all the time and feel fine doing it, it's more when holding something for a certain amount of time.

    My primary care doc thought it was myastenia gravis but she said everything came back ok. So not sure. I haven't lost muscle mass at all though.
  • HappyAliveDay
    I'm very late to this post, but I was diagnosed in October with MS and had never had any symptoms above my hands on the body.  The past week or so I have been experiencing tingling and numbess in my lips and cheek, like I've been to the dentist.  I wonder if this means I've developed a new lesion or if it is just part of the process....  Does anyone have any thoughts on that question?  I seem to be caught up in the number of lesisons I have and pay attention to every one.  Wondering if I need to worry that there is a new one now.