Tingling lips just started - S.O.S. - do I go to ER?

[paperdoll]

I'm really getting scared - and I did a search on Lips Tingling on the forum.

Pudmott got help from B12 last year...

My feet have that electric hot and colding buring
and now my hands to my elbow have been burning (alsmost went to ER Friday for breakthrough pain of it all got too much)

I just feel like if I go in they won't believe me at an ER... (crying)

Sorry a downer...

What would you do?

[JenJen]

I think you should do what your heart tells you.  I can only tell you of my experience when I went to the ER in January.  I had shooting pins and needles down both arms and legs, and occasional burning in my triceps.  My "saddle area" felt numb.  I had increased tingling and numbness in my face and around my lips.  This was all new and all fairly sudden in onset.

They did bloodwork and a head MRI in the ER.  I got a bag of fluid since I was dehydrated, but all other labs were fine.  I was sent home and told to follow up with a neurologist for further eval. after my MRI came back normal.

My tongue, face and lips still tingle, after 6 months.  No one has figured out what's up, other than possible trigeminal nerve parastheia from Sjogren's.    My point is, I felt like I was having a stroke or something that day, but here I am 6 months later with the weirdness still happening and really no answers.  Of course, if anything on your face is drooping or suddenly weak, or extremities suddenly weak, the ER is definitely the way to go.

[DragonflyC]

How awful!

Does your doctor have an emergency number where you can reach him/her (maybe through an answering service)?  I'd try that first.  

Do you have any idea what set your body off?  Have you experienced a change in the external temperature where you are?  Are you stressed about something?  Do you have a fever?  

Have your hands turned any odd colors, like white or blue or really red?  That could be Raynaud's reacting to the temperature changes in summer (hot outside, cold inside).  It's not usually a big deal, but it can be serious.  If you think that's the problem and nothing is helping, you might want to go to the ER.

I get help for my Raynaud's with warm, but not hot, bathwater (it seems to even me out).  Don't try it if you aren't sure what's wrong, though.  You don't want to make things worse.  Also, my lips have been known to tingle when I'm having a Raynaud's attack, as well as before a cold sore.  

Is someone there with you?  Can you call a friend of loved one?  An outside opinion always helps me out when I'm not sure what to do.

I hope that you get help soon.  Please let us know what happened.  

Best wishes.

[eyeamdry]

I have tingling/numb lips and have had this for several years.  I had it before I knew I had Sjogrens.  I also have pins and needles (tingling) in other parts of my body.   I also had trigeminal neuralgia from Lasik surgery years ago, but recently got some relief by taking Lyrica.  I take 100 mg 3x day.  It stops my lips from tingling and helps the eye pain a lot.

None of my tingling has been so quick to start, or bad enough in the beginning to prompt me to go to ER.  You should by all means, though keep that thought if you feel it's necessary.  Talk to your dr about Lyrica.  Lucy

[gurs]

I have all of the this...the numbess/tingling/pain/buzzing from head to toe, it never goes away. I have the foot drops, weak muscles, dizziness, stomach, bowel/bladder issues..the list goes on. When all this started I went to the ER because my vision was so blurred and I felt like I was going to pass out and have a stroke. They did all kinds of tests, Lumbar puncture, labs and couldnt find anything and chalked it up to a lupus/sjogrens flare.  I went to my neuro who did the MRI's and found nothing....again, prob sjogrens related. Seems like alot of us have these issues. Mine all started when I went into instant menopause after my hysterectomy...guessing its the hormone inbalance making my sjogrens worse.

I would have all your neuro testing done first, maybe B12 testing, hormones, including thyroid,estrogen, etc and go from there. If they cant seem to find anything, must be the
sjogrens???

If you feel really ill, get to the ER.
gursie

[navydad]

Not to beat a dead horse,, but once were labeled as a little off center,, or we have a DX of Sjygrons, most ER doctors will either
1) blame us for being a little (crazy and hysterical)
2) tell us its part of the SS,, when most off them have no clue what it is in the first place,, like soone said a little while ago,,I am not going to any more ER;s unless i;m turning blue, my heart stops,, or worst case scenerio,, I just dont wake up some mornng,, which wont require any trip a ER,

try to remember that were all scared, scared of what the present is,, and what the future holds,, I;m trying to work with everything I have going on,, just getting up in the morings after not sleeping most of the night is becomong old,, but staying home has less apeal right now,, I feel a bit more productive trying to do something,, then sitting around at home doing nothing but worrying about everything, I;m struggling,, but i;m making it somehow

[Patze]

Hi paperdoll,

I'm sorry that you're suffering with the tingling issues, yep, I've been there, done that one too (and still waiting for a neuro to diagnose).  The neuro did prescribe 1000 B-12 mcg per day along with 1mg of folic acid; it has helped the old memory a bit, but there are still days.  Have any of your doctors ever checked your B-12 level?  If he did, what was the result?

Hang in there paperdoll, and keep us updated, okay?

Take care -

Patze

[irish]

paperdoll, Welcome to the masses!!!!!

With that being said, it is so good that you have such a good rheumie and she sure didn't say anything to make you feel guilty for going to ER. I don't know why we should feel guilty. Unless we are bleeding to death or in cardiac arrest they don't want us!!!

I have been told what to come to ER for----like they are blaming me for wasting their time. Have you every had them say to you, "And what would you like us to do?" My husband says to tell them "you're the **** doctor, you should know the answer to that question.

Anyway, glad to hear that you will be taken care of in a timely manner now. Let us know what testing results in. Irish

[gurs]

There are alot of things that can cause the neuropathy...B12, all hormones, Celiac, Heavy metals, Lyme's, Porphyria, too much B6, too much ZInc...sometimes it takes
an alternative doctor to find out whats really going on. Best to have as many tests as possible. My neuro problems started pretty much overnight and I ran to the ER also.
I really thought I was having a stroke....unfortunately, the medical community cant do much for us at all...they just refer us to our rheumy's...its really sad.

[Patze]

Hi gurs,

I sure agree with you about "the medical community can't do much for us at all...they just refer us to our rheumy's"!  I had a GP that told me that he couldn't help me as it's in the rheumy's realm (this was when I was trying to figure out why my lips burned/cracked so bad for more than a year at that point).  Another genius.  The one I have now is not much better, he doesn't try to shuffle me off on another doctor without trying (well, his PA that is, haven't seen him in a couple of years now).

And I'm starting to really think that I might just have to find a good alternative doctor as I don't seem to have much luck finding a good Internist.


Patze